362: Status Update: Vision

 

Ed's birthday party theme this year was *Despicable Me*

Ed’s birthday party theme this year was *Despicable Me*

Now that I’m 3 years post injury I’m going to take a few days to do a series on Status Updates. The first update is vision.

To recap, I was in Vision Therapy for 9 months. There is a diversity of opinions regarding VT’s efficacy. I am squarely in the camp of: I ❤ VT and saw measurable improvement bc I did it. But do your own research and choose what’s right for you – here’s a link: www.VisionHelp.org

149.  Why I Choose Therapy

149. Why I Choose Therapy

 

Two of the my favorite reasons I know I improved (other than my test scores) are:

1) Ai Ai told me that summer my eyes point in the same direction more often than they used to even before I got sick. (I have a “lazy” eye on the left, and it often does whatever it wants.)

2) The first time I saw my neurologist 2-3 months after starting VT she interrupted my litany of symptom reporting to say, Ummm…you’re using your eyes in a COMPLETELY different way. Normal people will kind of look around the room while conversing. I was unable to do this prior to VT. While I was talking to her she felt compelled to verbally note the change since it was so marked. PS. When I first floated the idea of trying VT with her she was not overly optimistic. I did it anyway :).

 

But my favorite reason for loving VT is that it’s easier to read. When we did the initial goal-setting process I told them, I don’t want to read, I need to read. Everything I’m trained for requires reading. When I discovered that I knew how to use my eyes better and could manage a (huge print on the Kindle app) book I was SOOOO excited. I have always loved reading – that is how I learned to write.

That said, I still can’t read normally. I prefer to listen to the Bible and other books whenever I can, but I know the visual hygiene tricks to manage better when I need to digest information through the eye gate. I routinely skip lines when trying to read music so I avoid it when I can, unless I’m playing for the congregation at church. If you play from the hymnal they can’t say you’re playing too high or low – hey, it’s what in the book!

150.  Back to "Normal"

150. Back to “Normal”

 

I am grateful for the measure of improvement I’ve seen, though. It’s definitely settled down since I first woke up and was convinced I was on a merry-go-round bc the room was spinning – a full rotation at top speed. Nowadays things still move if I’m tired or if I turn my head too quickly, so I do my best to avoid sudden motions etc.  It is also difficult for me to watch a high speed car chase on TV or a person moving fast in real life.  For example, when Trainer D decided that it was time to ramp up our workouts (his standard practice is to do this to clients at the 5-6 month mark) he started moving at warp speed.  It kind of makes me nauseous since it seems he’s like on a permanent fast forward mode, but who am I to argue with his data-based training methods?  Actually, if anyone would try to argue it would be me, but he’s the one with the experience so fine – we’ll do this his way.  :/  Timmy was moving in a similar manner a couple Saturdays ago when he was trying to get out the door for Josh’s baseball game.  The progression of getting-ready-maneuvers was so relentlessly rapid I had to look away.

I still think the car is moving sometimes when we’re at a complete stop, so that’s not great – but I’m learning to trust my chauffers more since I know my eyes give me weird feedback sometimes. My left eyelid also twitches (it did it a lot a couple months ago, but it’s better now) with fatigue. But I’ve never mentioned it bc it’s a low-priority symptom in the grand scheme of things. I’ve learned how to manage these things more effectively as time has worn on and my Recovery progressed.

I am definitely not as observant now since I use my eyes differently. I will often misread signage or texts that come to my phone, which is problematic since the texts I receive often communicate information relevant to my life. Except the slew of “Happy Mother’s Day texts I received recently from people who had the wrong number (that happens to me a lot).

160.  Welcome to my World

160. Welcome to my World

 

Another favorite example is when I made a carrot cake smoothie a couple months ago at home in my trusty Vitamix. I was so proud of my kitchen mobility – I peeled the carrot and cut it into chunks with my serrated spatula and threw away the peelings. A minute later Mommy came by and stood at the trashcan laughing. It took me 30 more seconds to visually ascertain what was so funny: There was my little paper towel of carrot peelings neatly rolled up and sitting ½ a foot from the trash can.

Oops, my bad. I’m so glad Mommy can laugh about these things. You’d think she’d be tired of picking up after me by now – but no, she is a very forbearing woman. Thanks, Mom!

12704671124_59609200f7

 

 

 

 

 

149. Why I Choose Therapy…

…and trust the Pros to help me recover.

Why I Choose Therapy || Ann Ning Learning How

Let me clarify in case anyone ever comes across this post in their internet research:  When I talk about “Therapy” and “Recovery” I mean the kind of rehabilitation you receive after a stroke, car accident, joint replacement, etc.  I am also referring to alternative medicine, but I couldn’t think of a short and comprehensive title.  If you are looking for information on substance abuse recovery or psychological therapy, please do keep reading as this might still be helpful, or at least interesting.  Also, my condition is not permanent (kind of – jury’s still out, somewhat) and non-degenerative.  One more thing – my immune system is not deemed to be compromised, so do not worry if your children/dog sneeze on me (I’m talking to you, B&G).  Not that I’m inviting sneezes – it’s just that you needn’t worry about your kids wearing surgical masks while in my presence.

When I first starting going to The Place (ARHM, my first outpatient rehab hospital) I was still getting accustomed to RecoveryLand’s layout and it was so early in my treatment there that I hadn’t yet been paired up with A (6).  So I asked E (10  – remember, my numbering system isn’t chronological) if I was just going to get better in time and why I had to do therapy.  Well, she said, it’s likely you’re going to heal with time, but until then…[what do you do?]

1.  Therapy is about living life.

As I prepared to be discharged from The Place after ~6 months, I had major anxiety over getting kicked out.”  A (6) explained to me that there was nothing to be nervous about; the idea was that I’d eventually return, and that therapy is about learning to live life.  I didn’t take the “living life” concept seriously until I really thought about it for months after, and he was right.  (Side note:  I hate it when A’s right!  I said that to Mom in the parking lot after receiving another medical vote for a recovery that would be less than 100%.  Okay, fine.  Let’s go for 99.9..I extrapolated this idea from a convo with Je. PS. Props to docs who have to say unpopular things.)

It’s true in that I practice what I learned in therapy as I sit in a chair, eat a meal, type this at my computer, and basically, while I do everything else when I’m awake.  Yes, I learned how to sit on a mat in the gym, and how to get up from the gym floor if I had a fall, but I sit, fall, and get up in the real world.  And I go to the store and eat at restaurants and climb the stairs at church.

What E said to me was absolutely on target in a thought-provoking way.  Maybe I would get better by just waiting this thing out.  But in the meantime I still want to get my own cup of water when I’m thirsty, and venture out into the community.  So I’ve learned the skills that help me to do what I want to do in the real world by practicing them in a controlled environment under the supervision of licensed professionals. There’s also a huge achievement factor in RecoveryLand – you have to set goals in therapy, and the point is to figure out ways to reach them, even if it takes a while.  Progress is closely monitored and systematically measured so you can tell if you need to adjust your strategy, or if your plan of attack is proving to be effective, it’s easy to celebrate.

2.     I’d rather be doing something (even if it doesn’t work) than nothing.

Have you seen my medical disclaimer (click on the link and scroll down)?  I really do stand by that – e.g. there is a school of thought that says, I love Vision Therapy – there’s no other way to train the brain to “see” the best ways your eyes can see.  There’s another school of thought that simply says, I don’t believe in that – that doesn’t work.  Reading is difficult for me at present, but when my Eye Doc told me to go home and research VT before deciding to go this route it took me two seconds to understand that this course of treatment is a source of debate, although I have chosen to immerse myself in an environment of pro-VTers.  So yeah – everyone needs to do his/her homework and decide what the best course of treatment is for him/her.

At my next appointment I told my Eye Doc, I’d rather do this even if it doesn’t work than nothing.  I’m ignoring the question of “does it work?” at the moment and just saying, Seriously?  Sitting on your hands and hoping for the best is an option?  Well, it’s a bad option, IMHO.  (Side note: Remember that my condition is in flux.  I am not referring to dealing with a permanent condition. Learning to live wheelchair or prosthetic-style = huge heavy lifting.  )  I’m NOT saying, God helps those who help themselves (that is not scriptural, BTW), I’m just saying that my personality does not lend itself to inaction.  I need the idea of goal-setting and a professional to break achievement into baby steps.

So I chose VT with a well-rounded view of the discipline, and I was encouraged to pursue the necessary research by my VT Practice, and I recommend research to you as a good course of action before pursuing any kind of treatment.

Admittedly, I chose acupuncture with somewhat less (okay, zero) research.  I just went to CMD based on my Uncle/Aunt’s recommendation, and the vague knowledge that Chinese people having been doing this sort of thing for a long time and people all over the world love acupuncture, so I wanted to try it, especially since I had nothing to lose.  Like I told CMD on day 1, my primary goal is pain relief (check!  Goal met), any other relief I can get from her ministrations I will treat as a welcome surprise.

3.     Therapy and Alternative Medicine have changed the way I think.

I’m still ignoring the “does it work?” question.  Well, let me list the following items – these may be interpreted either as improvement due to treatment or coincidence, depending on your persuasion:

a.      Vision:  My neurologist saw me 3-4 months after I started VT.  I had not seen her since starting treatment.  She immediately noticed that I was using my eyes to look at her while talking in a way I had not been able to before, and that my nstagmus (jumpy eyes) had improved (except when looking up).

b.     Vision:  My tests (e.g. those crazy looking space goggles) indicate my left eye is “waking up” – meaning that I am using my eyes in a way I was unable to pre-injury.

c.      CM:  The only relief I’m willing to state emphatically (since I’m naturally tentative about these things) is that I have much less pain in my left side since starting to see CMD.   Other things I’m still processing but have happily noticed:  greater mobility in the right (weaker) side of my face, more freedom of movement in my left hip, overall improvement in my gait.

 

Regardless of how I answer the question, “does it work?” I am fully confident in saying that I would not have played the piano at church on Sunday had I not been a VT patient.  My Eye Doc asked me to set a goal, so I did – being added back in to the roster by April (check!  Goal met).  I got to choose any goal I wanted to, so I chose a very functional activity that impacts my life and it happened because there’s a practice full of Doctors and helpers down the street from me who all thought that yes, it would be perfectly natural and attainable for me to play for a group and look at the hymn book like I used to do.  So I did the exercises I didn’t like and made my cryptic notations on my music sheets and practiced because being in the VT environment made me think it was possible, and further, a natural next step in recovery for me.

I told Mom last week that one day I’d come to a curb and step up/down it without thinking…but not today.  Today I still need to think hard about navigating curbs, but this and so many other things (even something as simple as using a public restroom) are no longer barriers to me participating in life since I know how to approach all these little individual tasks since doctors and therapists taught me how.

I also am even more cognizant of what I eat since CMD can tell all sorts of things by just looking at me.  Not kidding.  I feel like she’s got spy cameras in my kitchen.  But this is a good thing, mind you, given my body issues at present, and also because I definitely need the highest quality fuel right now.  And I’m able to cook more now since  I practiced at The Place and have examined the faux diner at Planet Rehab, and consulted knowledgeable people on how to do this.  I occasionally see patients cooking in the kitchen when I pass by during PT, so I figure that if they can do it, so can I.

Also, the fact that CMD shows zero surprise when I tell her this or that feels better is good for me since she expects improvement, so I feel more optimistic.  Do you remember when I wrote 131. My Expectation is?  The day after I posted it I remembered one of my favorite entries in The Valley of Visiona collection of Puritan Prayers & Devotions.  This is “Repose” –  p.298 in my version, gifted to me by Drs. M&S when they stayed with me during my Happy Summer of 2010 in Oregon.

 Repose – from The Valley of Vision

Heavenly Father,

My faith is in thee,

My expectation is from thee,

My love goes out toward thee,

I believe thee,

accept thy Word,

acquiesce in thy will,

rely on thy promises,

trust thy providence.

I bless thee that the court of conscience

proves me to be thine.

I do not need signs and wonders to believe,

for thy Word is sure truth.

I have cast my anchor in the port of peace,

knowing that present and future

are in nail-pierced hands.

Thou art so good, wise, just holy,

that no mistake is possible to thee.

Thou art fountain and source of all law;

what thou commandest is mine to obey.

I yield to thy sovereignty all that I am and have;

do thou with me as thou wilt.

Thou hast given me silence in my heart

in place of murmurings and complaints.

Keep my wishes from growing into willings,

my willings from becoming fault-finding

with thy providences,

and have mercy on me.

If I sin and am rebellious, help me to repent;

then take away my mourning and give me music;

remove my sackcloth and adorn me with beauty;

take away my sighs and fill my mouth with songs;

and when I am restored and rest in thee

give me summer weather in my heart.

PS.  Thank you for your prayers and support for my piano playing adventure.  It went well (without incident).  More later.

125. “Pirate!” (Try again.)

This was when I wasn't even a pirate - I closed both eyes as often as I could.

This was when I wasn’t even a pirate – I closed both eyes as often as I could.

I was doing a maze on the rotator at VT this week – minding my own beeswax like a good girl – when a little preschool-aged patient ran away (literally) from his activity, leaned against my knee, looked at the rotator with fascination, then at my face (wearing a patch over one eye) and told the room, “Pie-yette [Pirate].”

I couldn’t help it – I burst out laughing. I mean, who else would have the guilelessness to call another patient a “pirate”? It’s funny bc it’s how I often think of myself when I’m patched, and I refer to home VT exercises as “Pirate Time.” But coming from the lips of a child (and fellow-patient) it was hysterically funny.

This particular little kid was wearing some kind of neurological headgear (pretty subtle, actually, not like a helmet or anything). Judging from the way he was bouncing around the room his mobility is fantastic, but I thought he might be working through some speech issues in addition to having to go to VT. It made me think of another exceedingly handsome little fellow I see on Sundays. He’s working through some speech things, too, and he was trying to tell his mom something after the meeting was over last weekend. He couldn’t quite get it out, though, so his mom took a few guesses (emphatically negative by her son) and then told him, “Okay, try again.” Write that phrase down, people. Along with “the research shows,” I feel like this is a good phrase to keep in your back pocket. Delivery is important with this one, though. The way my friend (the mom) said it was full of patience and encouragement. The implication (to me, at least) was that the boy will not just have to get by on good looks for the rest of his life – he’s got someone (actually, lots of folks, beginning with his parents) to wait for him to “try again” so he can make his needs/wants understood.

Seeing little kids dealing with challenges is one of the saddest parts of living in RecoveryLand. Every time I see a tiny wheelchair at the hospital I want to cry. But I often see these chairs occupied, too, and the kids are usually chattering away, talking to their friends/therapists/caregivers, oblivious (for that moment) that they are in a tough spot.

Kids like the one who called me “Pirate” make my day. Their parents (all parents – of kids healthy or not quite) might cringe and feel bad that their child infringed on a patient’s privacy or personal space. But I’m just so pleased to be noticed by a child like M (the “Pirate” kid) or any other child, for that matter. To me, it means that they think I’m “safe,” that even though parts of me are different, they aren’t scared to talk to me, ask me questions, or say that I look like a pirate. That kind of acknowledgement is worth a LOT to me – it makes me want to let these kids “try again” as often as they need to. After all, I need that kind of grace, too.

P.S. I finally noticed that the sharing buttons below each post let me see how many of you are sharing. Thank you so much for spreading my video from yesterday and “Don’t You Care?” around. Apparently you all have lots if friends – thanks again!

P.P.S. What’s that thing on your neck? 🙂

57. I want to hear you say it.

a book at the doctor's office yesterday (there is no kissing in the VT exercise, but the peekaboo pose is relevant)

a book at the doctor’s office yesterday (there is no kissing in the VT exercise, but the peekaboo pose is relevant)

We tried this thing I’ve been working on for a couple of months yesterday at VT.  It involves a few more steps but essentially you’re supposed to put your index finger over one eye (not touching the eyeball, OD4 cautioned me) and look out of the other eye at something (usually a person).  Apparently normal-seeing people immediately see a fused image of the index finger and the person’s head, but that is hearsay for me since I am not a normal-seeing person.  I’ve made my parents do this and they say the see the fused image right away.  I’ve also confirmed that what’s supposed to happen really happens with OD4 and L.  When they say, Yes, of course they can see “it,” I’m thinking, really…well what about me?!?!  I just tried it again by looking at my desk lamp.  Still no dice.

I ask other people to verify that they can see what you’re supposed to see since I’ve never seen it so I want to hear other people say that it totally works because it encourages me to keep on trying.  Like yesterday I was doing an exercise with a little fiber optic light and a pen and paper.  I never got to the pen and paper part since I couldn’t see what I was supposed to see with the light, so I asked L to do it.  She good-naturedly complied, and I had proof that motivated me to keep trying for another five minutes.

I also applied this “asking other people to say things” principle to my illness.  Last night I heard Mommy explaining to “Aunty” A on the phone that part of my cerebellum was removed, so there’s a lot of heavy lifting attendant to my recovery.  I overheard this from a few feet away from my position on the sofa and I was mildly curious since I didn’t know whom Mom was talking to.  Mild curiosity is actually major progress for me since the last time I overheard a conversation like this I wept because it was another piece of evidence that this thing had really happened.

I was practicing with my rollator (the rolling walker) one day a few months after our homecoming and I passed by the room where my bed was and where Dad’s desk is.  Tanpo was on the phone with a colleague who was unaware of my illness and Dad was filling him in.  (Side note:  It’s naughty to listen to other people’s conversations.  I only did this since the subject matter was about me, and I was also in my reality-testing phase.)  The door was open just a crack so I parked my rollator in the hall and sat on it, listening to Tanpo recount the story I kind of thought might be true but hoped wasn’t.  I cried as he spoke and then I pulled it together enough to keep on practicing my walking.

Some time earlier I had called Ernie and Ai Ai and asked them to tell me the story of what happened to me.  They readily assented (thanks, guys!) but my sister had a conversation with Mommy later re. my “confusion.”  I also made my parents explain what happened to me as we met my new doctors in MD.  When we went to see the PDG (ENT) so I could get scoped, he asked, “So what brings you in today?”

“Daddy explain,” was all I said, waving my hand in the general direction of my father’s chair.  Mommy had done the job when we had gone to my PCP’s office, so in the spirit of equity I thought it was Tanpo’s turn.

So I guess it’s a good sign that I’ve progressed from making people verify that my injury actually occurred to verifying that the exercises that will make me better are actually humanly possible.  E.g. a few weeks ago I watched Tanpo come down the stairs without holding on to the railing (Gasp!  Why wouldn’t anyone hold on to the railing if it was an option?!)  I actually do remember what it feels like to do a lot of things like a cartwheel etc. but for more common activities, like walking down the stairs or running on the treadmill, I like to be reminded of what they look like.  So if you ever see me staring at you strangely you’ll know what I’m doing.

 p.s.  My brief Therapy Vacation is over.  I skipped VT yesterday (FYI the “yesterday” in the post above refers to Monday sine I wrote this on Tuesday) but am going to the pool and PT this morning.  I took medicine etc. but this illness is MUCH easier to handle than that thing that happened a couple of weeks ago.