99. Mirror Image

One of my favorite passages in all of Jane Austen’s work (besides the fruit pyramids in P&P) is the part in Persuasion where Admiral Croft describes Sir Walter Elliott’s dressing room.  Background:  Sir Walter is a handsome man who is extremely vain and rather silly.  He is old enough to have three adult daughters.  Sadly, his wife died a long time ago, and any sense of economy died with her.  As a result of his financial ineptness, Sir Walter is forced to “retrench” and so relocates to Bath and rents out his estate to hopefully get out of debt.  Admiral Croft becomes his tenant.

Admiral Croft visits with Anne Elliott, the second daughter of Sir Walter, and the heroine of the story, and the Admiral tells her one of the first things he did upon taking possession of the house was to move all of the looking-glasses out of Sir Walter’s dressing room.  Your father must be a rather dressy man, he tells Anne, There was really no getting away from oneself!

I love that line.  It speaks to how silly/vain Sir Walter is and how different the Admiral’s lifestyle is.  I often feel like I’m in Sir Walter’s dressing room when I’m at therapy because at every hospital, the gym is lined with mirrors.  When the mirror on the wall is too far away, they have full-length mirrors on wheels that they can roll right up to you so you can see yourself up close.

I used to look in the mirror in my room or in the gym at RIO (3^rd Hospital) and ponder the scar on my neck and how my hair was sticking out in funny places.  There was a large shaved patch in the back where they operated, and a small pokey thing in the front where a drainage tube once resided.  I would look at these things and think, Okay, maybe I did get sick after all.

I wasn’t sure since I had been asleep for the worst of it (thankfully).  I still don’t have the feeling of being “present” at the events I’m told happened.  Instead of viewing my own timeline as if I’m looking at my reflection in the mirror, I see pictures/videos, or read updates written by Tanpo or Ai Ai.

Tanpo has been helping me edit my “Memoirs” recently and he commented on how short the OHSU and Vibra (1^st and 2^nd Hospitals) chapters are.  Well, I was kind of asleep, I explained.  He suggested that I read up on what happened so I’m more aware of just how much the staff at those facilities did for me and can write about it.  I recently read through Ai Ai’s Facebook updates and I was like, Oooh – what happens next?!  And when I came to the part where she had to go home to her family after visiting me in Vibra I was sad.  I felt the same sadness I felt but couldn’t express when we were living that moment and I told her, “Quick – eat some cookies – chew fast!”  I was still pretty loopy and was concerned the poor girl was too skinny.  So I wanted her to eat some cookies in my presence before she got on the plane.

Last week I commandeered Tanpo’s phone in the car and scrolled through his picture gallery.  There were lots of pictures of my hospitalization I had never seen before.  One of them caught my attention because there was a skeletal face with one eye open and my hair on its head, body propped up weirdly in a chair.  “That can’t be me,” I thought.  And when I scrolled to the next picture the skeletal face looked even worse (there was a strange grimace), but the face was undeniably mine.  “Okay, that’s me after all,” I thought.  I will not be sharing either of those pictures with you – you can thank me later.

A few weeks ago I had lunch with some friends and I made a cavalier-sounding joke about the onset of my illness.  “You don’t know what it was like,” J told me in a jokey chastising sort of voice.  Her statement was funny at the time, but it’s also terribly true.  I really don’t know what it was like even though it happened to me.  I’m dependent on what other people tell me or what they recorded at the time.  Tanpo was the primary documenter, but I’ve read Ai Ai’s updates more recently.  All you need to know about that time period is summarized in three words:  e-coli and spinal tap.  ‘Nuff said.

I showed those pictures to Mommy later that day, and I totally cried over that first one that I didn’t think was me initially.  I cried because it looked sort of gruesome (even though there was no blood or even swelling), and also because I didn’t think it was me.  I have no recollection of any such scenario, and in the pictures I’ve seen thus far I’ve either been more awake or fully asleep – not this strange in-between state.  But then Mommy scrolled to the next picture (the one that I thought got worse) and told me, Look – you’re really happy here.  And sure enough, once we zoomed in I could see that the scary grimace was actually a facial contortion meant to convey happiness.  I can understand why.  The bandage on my neck indicates that my trach had been removed, and Mommy is standing next to me with a paper cup presumably full of ice chips.  My mouth is probably half open so it can receive the spoonful she is about to offer me.  According to my sister’s account, I had been asking for ice chips for at least 5 days.  The relief I felt when Mommy was finally able to let me suck on some ice was wonderful – I remember that part clearly.  So even though that picture is painful to look at I’m glad that moment was captured.  It’s characteristic of this whole experience – hard to look at, but joyful.

Another favorite mirror image: (I was learning to tie a ponytail.  Can you tell?)

220. I’ve Got this

 

433. Welcome Home

One of the most astounding parts of living in RecoveryLand is that I’ve made new friends here. Some of them are healthy, some of them are/have been ill, and all of them make RecoveryLand a more interesting and fun place. One of them is coming home this week.

Actually, I’ve only ever “met” his wife, D (online). I was just getting over my Oregon Trip and one morning I woke up at Boo Boo’s and saw a message on my phone from AVMSurvivors.org – it was an SOS message from D, detailing how they were just moving out of the Neuro ICU into another unit (I think) and how it was scary bc all the nurses were new, and she wasn’t sure how her husband, S, the one who had the huge AVM, would handle it. I shot out of bed and typed a reply bc I know what that feels like.

Spoiler Alert: he’s handled it, and every subsequent transition, quite well, thank you, with D at his side. I almost fainted the morning I read that S walked (with a walker). They’ve been at this for more than 6 months. Life has been turned upside down and they’re getting ready to find a New Normal as he begins his outpatient career. Right now they’re at their last stop before the Big Move Home: a Rehab hospital people said he’d never make it to.

Mm hmm. Well, he made it. And you know what? He’s going home. S and D are the latest in a string of dynamic duos I’ve been privileged to meet in RecoveryLand – people who really meant the “in sickness and in health” vow, and have executed (and continue to execute) it with humor and grace.

If you are one of these people, thank you for your example.

And to S and D: Welcome home.

PS.   The line, “Now you can do whatever you want!” in Ed’s sign above is a reference to my post a few weeks ago.  When I was preparing to be discharged from RIO (3rd Hospital) I told Mommy gleefully, Hey, Mommy, now we can do WHATEVER we want!!! Mommy was like, No, that’s actually not what that means.

When I reminded her of that incident she cracked me up by telling me my voice was so full of HOPE.  🙂  I love you, Mom.  Thanks for putting up with my shenanigans.

 

419. Nothing Happened

 

418. You’re pushing it

Post Swimming Lesson

When I started researching post-Rehab exercise options in 2013 I looked at a gym’s website and clicked on “ Stroke Clinic.”

Sigh. It was for people wanting to work on their swimming form, not for brain injury survivors like me.

I guess I only have one kind of stroke on my mind these days, which is why logic took a vacation. But last week there was an encouraging sign when I saw the Physiatrist to hear about my not-bones.

We were discussing whether I should get an MRI of my shoulder. (I opined strongly that it was unnecessary and was ultimately successful. I am my father’s daughter – my persuasive power is not to be underestimated.)

393. Skill Set

 Do you have a clip? She asked.

No, I replied, tipping my head downward so she could see my headband. It’s just elastic.

After a few minutes I was like, Oooohhh – you meant an aneurysm clip, like in my brain! I thought you were asking what was I wearing in my hair.

Bahahahahaha!! My bad. I misunderstood the question. My POV (point of view) is heavily colored by my injury, but not always. 🙂

It was a good visit. I was glad to get a good report on my x-ray results last week (my bones are good!) and I hoped to get a similarly optimistic professional opinion on my soft tissue. This opinion, however, was not forthcoming.

I cannot say that I received medical clearance to continue exercising. I did, however, get a good dose of perspective from a doctor who earned my respect as a physician, athlete, and a person in less than an hour. Plus, she didn’t say, “No.”

She’s concerned that I’m pushing it. Admittedly, I am pushing it. I see my Trainers 3-4x/week, and I’m concentrating on building muscle, “running” stronger, longer, steeper, and faster. Trainer D doesn’t know about the “faster” thing. He told me to leave the speed alone, but I don’t think he really meant it. Anyway, Coach R knows, and I’m taking my 0.1 increment approach. I’ll tell D after I reach my next milestone. That’s how I roll.

She saw that I had basically shaded both sides of all the pain figurine diagrams on my questionnaire, and I guess that was a red flag to her. Two years ago, when the hemiparesis surfaced but I couldn’t find any relief (this was prior to acupuncture) I had accepted a certain level of pain as inevitable and toddled along as best as I could. Her concern is that I might see some gains now, but I might pay for it later.

Then came the bit about how substantive gains come early in Recovery. She said 18 months, whereas I’ve most often heard 12. Either way, I’m obviously waaaay beyond that (3.5 years).

This isn’t news to me. It wasn’t a shock like the first time I heard a POV that was less optimistic than I had hoped. But it still feels like an elephant sat down on my heart when I get an opinion like this.

So how we left it was that I was supposed to consider scaling back. Let me say again that she’s an athlete – I sensed zero aversion to exertion – she was just cautioning me bc of what she’s seen personally and professionally.

Well, I considered it. And I’m not stopping. Of course I would have loved to have received medical clearance to exercise, and still advise people to do so, but midway through the appointment I gauged the situation and concluded that I would not be able to bend this doctor to my will. So I abandoned my plan of trying to force the issue.

Again, she didn’t say, “No,” so I’m using my own judgment here since nothing is growing in my brain that shouldn’t be. As I told Coach R prior to Oregon as part of a heartbreaking conversation re. emergency preparedness, My scans are clean… I will not be bleeding again, and in that sense I am comfortable with the level of medical assurance I’ve received thus far that exertion is fine for my brain and my body.

Apart from the brain-related risk, the other huge issue in my mind is that every medical provider I’ve seen on the East Coast has a very different POV from those who treated me in Portland. No one here saw me when I first got sick. There has been a lot of emphasis on death and dying (not just of brain cells but of me), and my parents were told I was half-dead by the time I made it to surgery.

By the time I went home from RIO (3^rd Hospital) after a month-long crash course in being awake post-AVM and stroke, my PT said, This is like working with a completely different person.

Over three more years have passed and I’ve come a long way. And the reason I’m pursuing Recovery at this pace is bc I’m not seeing negligible gains, I’m seeing big ones that are crucial to the lifestyle I want to lead and the calling I’m finally admitting is mine. As I’ve gotten more of a handle on just how bad the situation was I am increasingly convinced that there is an extremely high degree of Divine Intervention going on here that makes all of this uncertain. Medical people have referred to my case as interesting, exceeds expectations, and remarkable. Laypeople tend to use the word miracle.

Further, I can’t say enough about the psychological benefits of exertion in my case. After I went to Oregon we went straight to Boo Boo’s house and I slept and cried for 2 weeks bc I finally had time to think about what just happened. One day I went to the kitchen and sobbed on Mommy’s shoulder saying pathetically, All my pretty things (wah)! I was missing my teacups and dishes so badly bc I had just given them all away.

361. Priorities

 

Then I decided it was time to get back to work. I showed up at The Southern Gym when they moved back in. At first I ran bc I felt like something was chasing me. By the end of that first week I finally no longer felt like I was trying to outrun something.

359. Running With Myself

So I’m going to keep on going. For the first time the things that are making be better are the things I sought independently, not bc a doctor said so. I’ve taken great pains to become a productive member of society within the physical limitations that are mine. I’m still progressing but I’ve realized that significant gains in RecoveryLand come at a physical cost. That said, when I look at the events of this past summer, for instance, when I felt fantastic in June and July but tanked in August and September, I’d do everything over in a heartbeat.

I’ve talked to my Trainers about this and am confident in their expertise in terms of physicality, safety, and caution. CMD keeps me on a real short leash and Gen informed me last week (after she said my ankle was better) that she’d be all up on me re. getting checked out by the ENT.

So I’m in good hands. That’s the update on what’s been happening in RecoveryLand. As always, thanks for praying – I need it more than ever!

408. Clarification

Let me explain this to you *one* more time.

There was some confusion last week when I shared my TV show analogy about going to the Gym: if Trainer D and I were a TV show it would be called Bossy Smurf works out with Animal Muppet. It would be immensely compelling programming, FYI. But I think people were confused bc of the example I shared (the StairMaster incident) and my sentence structure. So just to be clear, Bossy Smurf = Me and Animal Muppet (Brainy Smurf in disguise, actually) = Trainer D.

I might be Animal Muppet if we were talking about Coach R, but he is not Bossy Smurf. I know he’s very accomplished and all, but it’s best to leave bossing to the pros. Trainer D must have picked it up from watching me. Mommy has dropped me off before and told me, “Don’t be too bossy,” as I go to Training. Yeah, I think we burned that bridge a long time ago.

I saw a new ophthalmologist and N2 last week. My new Eye Doc was super nice and really listened but an eye exam usually includes the obligatory dilating of the eyes so by the time I made it downstairs to the Neurology department I couldn’t see anything so I’m not sure how I managed to sign my name for my copay. Periodically I like to ask (new) doctors for clarification on their stance on things like pain management, surgical intervention, and dizziness medication. I have ideas on these subjects in my head but like to refresh them against professional opinions occasionally.

When the first anniversary of my injury passed I had high hopes that N1 could give me a pill that would magically make the dizziness go away. She explained that I’d pay for it in additional sleepiness. Already possessing an

117. AVM Metrics

appallingly low qi I decided against the dizziness meds. N2 clarified the situation a step further. Apparently since I have a cerebellar disorder it’s going to heal via adaptation – so I need to actually feel some dizziness so my brain figures out to deal with it. (This is my layman’s terms summary).

122. All Abord the Dizzy Train!

I thought that was fascinating. One day I asked Coach R if he felt that “gotta get your sea legs” moment after stepping off a treadmill. Yes, he opined, that’s normal.

That’s not why I was asking, I said. I don’t feel that anymore bc that’s how I feel all the time.

I can’t say that the sensation of dizziness has decreased since I moved from the 2^nd to the 3^rd Hospital in Oregon (May 2011) but I can say I’ve learned how to manage it. Well, I should hope so – it’s been 3 years! But what I’ve felt to be happening makes more sense in light of N2’s clarification.

 

 

195. “I’m not doing that.” Never mind – I am.

Originally Posted 6.19.13.  This is a follow-up to yesterday’s post.  See?  I told you I couldn’t make this stuff up.  Last Saturday I went on a field trip with M (37). A friend, J, recently moved to the D.C. area and needed some groceries from the Asian market. Being from the suburbs, we naturally only frequent suburban stores – this turned out to be okay since Chinatown wasn’t yielding the necessary goods. Mommy suggested a big store in Rockville. I’ve only been there once and I thought that was enough – because it’s crowded and there’s the potential for jostling, and I witnessed questionable consumer behavior in the baked goods case. Mmm hmm. (Tip: In case you don’t already do this, when getting anything from a self-serve case, reach for the items at the back.) Mommy used to threaten that she’d take me there for “Supermarket” Therapy one day. M made good on that threat and decided to make this a dual-purpose trip. She’d give J a ride to the Chinese Store (referred to generically as the “Chinese Store.” JLSS and Dr. SJ told me on Sunday that they do this, too – they don’t refer to the store by name, they just say, the “Indian Store.”), and I’d meet her there for what she referred to as “Community Reintegration.” I wore a gait belt and she held Leo (see?)

And we marched around all the most crowded aisles I was trying to avoid, but she thought were good challenges. J got some groceries, so did Mommy, and so did we, for that matter. Notably, Mommy said a fight almost broke out in the bakery section (thankfully M and I were in the tea aisle at the time), and this was not the first time she had witnessed an altercation there.

A few weeks ago Mom came home one day, frustrated by how busy her shopping trip had been. People were shopping by the busload, she told me. At first I thought she was kidding, but she explained that she meant it literally. Apparently there are some Chinese senior centers around or something, and they occasionally fill a few buses and make a shopping trip in the morning. When I heard this my eyes got big and I mentally vowed never to go to this store again. But M had other ideas – plus she suggested we go on a Saturday morning (prime shopping time)! Horrors. I got over it, though, and I made it through an expedition I thought I’d never participate in.

I had to smile even though Leo got confiscated in the parking lot because when I left The Place, A (6) charged me to keep on going to the supermarket and push a cart as exercise.

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

I assumed he liked this exercise since it offered me support but also let me stand upright and have a more natural gait than when I used an actual assistive device. I used to go to a big discount supermarket near my apartment in Oregon and would get so frustrated because they only had carts, no baskets, and I would inevitably get stuck behind someone who made an excruciatingly long decision over the right can of beans to purchase. I eventually started carrying my own basket, but one night a friend at my Niteline Bible Study told me, See, there will come a time when that shopping cart becomes like a walker, and you’ll say, “Great idea, honey, lemme get one, too!”

I have thought about how B told me that 2+ years ago and I laughed and laughed. Because it is true – it became true for me (except for the “honey” part) a lot sooner than expected, but what was conventional wisdom turned out to be a legitimate gait training exercise.

On Saturday, though, J and Mommy needed carts for their groceries, but I didn’t get one. Since M was there I walked along without a cart. Yes, I got a few interested looks, but it was actually really nice to be free of the cart. It allowed us to walk around a lot of places since I wasn’t attached to anything. So I’ve graduated from pushing that huge shopping cart around the hospital to walking around a real store without anything – that’s progress. But what’s even more significant to me is the change in my thought processes. This is what it used to be like:

59. “I’m not doing that.”

But now I’m like, “Okay, whatevs.”
I know who calls the shots here.

Decision Day 2014

July 2014 | AVM Rupture Recovery Year 3

 

Mommy took these pictures at lunch last week.   I’ve been practicing my laughing lately and yes, I’ve started shopping in the little boy’s section since I started needing more exercise clothes.  I just can’t relate to what they sell in the women’s activewear department.

I explained to my Trainers last week that  the fact that I can look you in the eye and talk to you about this with confidence is not because I have been untouched by this situation.  It’s because I already decided…

223.  I Found Grace in the Valley

This is one of KAR’S pictures from the R Family tour of Israel last year.  I asked her to send it to me because it’s one of my Daddy’s favorite things to tell me about.  The Apostle Paul made no secret of his desire to go to Rome (Romans 1.10), but he ended up going in a way he would never have chosen – by appealing to Caesar he was escorted to Rome as a prisoner and used his time well to share the Good News with many of Caesar’s household (Philippians 4.22).  The fact that he didn’t get to go to Rome when he wanted to also resulted in the letter he wrote to the Romans – and we have profited from the epistolary treatise for generations.

KAR sent me this picture a long time ago and I filed it away in my Flickr account until I wanted to write about it.  Today’s the day!  I think Tanpo likes to tell be about Paul going to Rome because it is such an encouraging and instructional example of someone who was forced to walk a path he wouldn’t have chosen, but in retrospect we are privileged to see how the Lord multiplied Paul’s impact via those circumstances that were hard to live through but were chosen and planned from the perspective of the eternal Divine.

121. How to Eat Ice Cream While Minimizing the Health Consequences

KRK (remember him from the Life of Elijah – I Kings 19 at the end of my How to Eat Ice Cream… post?) wrote an article in this month’s Missions magazine.   (Do you get Missions?  You should.  Or if you want to save paper you can read it online.)  It’s called “When God Says, ‘No’ so that Missions Advance”.  It’s on the inside cover if you’re reading the hard copy, or page 2 of the pdf.  What an honor that would be – to receive this kind of “No” for His greater glory.  KRK mentions me in the article (thanks, K!) and when he first talked to me about it I was floored at the prospect.

I said this a couple of weeks ago, but this is not just “my story.”  It’s the situation the Lord chose me to entrust with.  Don’t get me wrong – a lot of times I feel like I could have totally done without the privilege of being “chosen”, but then I remember that He planned this from the beginning and will provide my resources for living and I can smile again.

A couple of weeks ago Ai Ai and I were Hee-Hawing in the aisle of a store as I pushed a cart along for exercise.  “Boo Boo,” I reflected, “sometimes I think I might laugh too much to be a credible disabled person.”  She told me, No no, the sound of laughter is evidence of a joyful heart – and that is a Very Good Thing.  I guess genuine laughter does point to a joyful <3, which increases my credibility as a disabled person who trusts God for His perfect plan even though things have been looking extremely imperfect for quite a while now.

When I shared what’s been going on with the lovely group of Ladies at the end of July it was the first time since I got sick that I could say, “I found grace in the valley.”  There is often a distinction between what we know to be true vs. what we feel to be true.   On that Saturday the two coincided for me in a very sweet way.  As I was talking I was thinking, “I’ve got this,” because this has been my life for 2+ years and so I know this “story” well.  But as I was talking I realized that many of the ladies there had no earthly idea these thoughts had been going through my head and it was good for them to hear me say what everyone was thinking and then chronicle how the Lord let something Really Bad happen to me and then gave me peace about it.

Seriously – if you haven’t read “The Turning Point” please go do so, now. You can also listen to a clip of what I said that morning (7:41).   I write for many reasons, but this is the primary one.  I used to give people a little speech at The Place before I handed out tracts: “I’ve had time to consider whether or not this is true, and I think it is, so I want to make sure you know about it.”  It was early on in my outpatient life and I was like, “C’mon – who’s really gonna say, ‘No’ to the girl in a chair?”  Heh, heh.  Sorry.

I was glad to see everyone on Saturday but it was a special treat to see R – JCJ’s mom.  Sister K came, too, and I got to meet her new baby and Grandpa, too.  It was great because I had corresponded earlier in the week with R but totally forgot to invite her to come on  Saturday!  Welcome to my world.  A couple of nights ago I also forgot to take my contacts out for the first time in 17 years.  I guess I was just really focused on getting in bed because my back was all done.

A year ago I visited with R and she asked me in such a gracious, winsome way, “Is it okay that you lived?”  She’s pretty much the only person in the world who could ask me that with the weight of experience behind the question and true friendship lending it sweetness.  The fact that she’s JCJ’s mom is yet another one of those things I see too much intentionality in to be considered coincidental.

Yeah, it’s okay that I lived.  More than okay.  And on Saturday I got to say why.

P.S. the title of this post is a play on the song, “In the Valley” by Sovereign Grace.  It’s based on the titular prayer from The Valley of Vision – the collection of Puritan Prayers and devotions introduced to me by Drs. M&S when they visited me during my Amazingly Happy Summer in OR 2010.  It’s a very peaceful song – if you like it go Google it and you’ll find that Sovereign Grace very kindly provides free tabs, lyrics, lead sheets and piano scores(melody and chords only) online.

 

364. 3rd Yr Status Update: Mobility

I made a 5-minute cameo at one of my church’s car washes and got my walker onto the grass so I could sit in the shade the Summer after my injury. Last year I showed up with Charles, My Rice Baby. Daddy said I couldn’t push Charles AND dry cars at the same time. I was like, WATCH ME!!! My friends’ children had to hang my towels up to dry but with a little help I did it :).

Learning How…vol 1 ch 10. The Turning Point

…I will never forget crawling to my wheelchair and then sobbing out of frustration. These days I remind myself that I know some folks who would be grateful to be able to crawl, and that God has given me peace about this situation…

A lot has happened since I found out (the hard way, since I refused to take people’s word for it) that I couldn’t walk. I can name the people who taught me how to sit up, to stand, and to walk. Now I have people teaching me to run. (Not that the walking thing has been perfected yet). In case this isn’t obvious: if you have helped me in one of these ways I will be loyal to you until I die. Team Tanimal membership benefits accrue to you and your family, existing or future, for life. I’m still working on defining the benefits package but right now it consists mainly of free entertainment.

Although I no longer live in a wheelchair I’ve developed an arms-only way of life. I’ll be sitting in a chair and I realize I’m putting an abnormally large amount of pressure on my arms. I’m not doing anything with them – just pressing them into my lap. Why? I don’t know.

I bet one of the ways Trainer D knew I had done gymnastics is because of the way I get up from the treatment table. I think of it like a wide balance beam since it minimizes the use of my legs and is more arm-centric. I know from my time with CMD that using my legs takes a while, and I have a need for speed. But Trainer D is trying to convince me that it’s your legs that are going to hold you up – not your arms.

349. Appraisal

He usually says this when I’m on the treadmill. He’ll hem me in with some tubing and tell me if my knuckles are white that’s a hint that I’m holding on too hard.

When I took Driver’s Ed my instructor, Mr. Z., told me the same thing the first time I drove on 495 ( D.C.’s beltway). He patted my hand (I was gripping the wheel with superhuman strength) and told me, It’s going to be okay.

I’ve been thinking a lot about trust lately. When I didn’t know any better and followed instructions without any fear of falling things were easier, but life in general was harder – I couldn’t even eat or wash my face by myself. But now I think of the terror that accompanied learning to walk and what I’ve learned from it and am desperately trying to apply it to learning to run.

347. Trust

 

183. Flight Phase

Nobody’s making me – this was my choice. I think I need more time to get used to the idea and it’ll be okay. M37 was the one who first made me walk around sans Leo. By the time I left Planet Rehab I was the one who asked her if it was okay for me to try walking around my house without the cane.

The first time Dr. A6 Frankenstein proposed this course of action when he was teaching me to walk I was horrified. Now I’m happy as a clam to be walking around without holding on to anyone or anything. One day I walked into the kitchen and told Mom – Hey, Mommy, look at me walking. This is a dream come true.

I dreamed at RIO (3^rd Hospital) that I walked to the bathroom on my own. I wanted to be able to do that so badly. Check! Goal met.

So I’ve made major mobility gains over the past 3 years. When I first came home I could propel my wheelchair but I was largely not allowed to go to a different part of the house without supervision. These days I move around the house freely. When I’m in the house I’m set – but when I need to go out in public I require accompaniment.

That’s why I am addicted to the AlterG. (Sorry, I know – I’m like a walking Vitamix and AlterG commercial. I promise – I have no connection to either company.) It’s a machine that allows me to be “alone” in public. It’s like being in the parallel bars but you can run in them and never worry about turning around at the end. You don’t have to trust anyone – you just get zipped in, the bubble inflates, and the issue of falling is eliminated.

But I don’t want to be dependent on a machine to run forever. I could never afford one, and Daddy has informed me that there will be no more purchasing of exercise equipment on my part, anyway. So that’s why I have Trainer D and Coach R. Coach R has been talking about doing some “light agility exercises” (that was one of those times when I laughed in his face but then realized he was serious – Coach R does not joke about agility), and Trainer D is…Trainer D. In fact, it was his overwhelming enthusiasm for ORFR that made me nervous enough to diversify my “trust” portfolio and seek out an AlterG and Coach R. I might diversify more but I need to consult with some folks first and go home. Meanwhile, I’m enjoying the rest of the school year with H and J!

 

 

 

362: Status Update: Vision

 

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

 

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”

 

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

 

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!

 

 

 

 

 

361. Priorities

The leg press at Ai Ai’s gym.

Coach R has spent several weeks teaching me how to get off the leg press: There’s a narrow bar here (pointing) you can use for balance.

Me: Hey, R – How ‘bout I just roll off and you catch me as usual?

Despite this method’s 100% success rate, he prefers good form. I’ll be doing my single-leg duty on the press and his disembodied voice (I think he’s in some other part of the gym), will exhort me to control the movement more. On Day 1 I was on the elliptical and he stood in front making the same corrections Trainer D had made the week before. Apparently I hadn’t internalized them. But the fact that my deficits have been consistently identified makes me think I’d better absorb what these people are saying and try to do things right.

I love going to the gym with my sister. She’s the first Tan to exercise this much. Ever. I like to sit on the recumbent bike while she goes to classes, plus the leg press is safely configured for my use. Today was the first day I noticed the problem these people have been talking about! I’ve kind of been taking their word for it and doing what they say as the path of least resistance. But today I did a couple reps without thinking and saw my knee cave in so I understood why these guys are so terribly intent on getting it to move correctly. Once I concentrated I was able to get it right(er).

328. Operation Clean

Now I’m turning my attention back to Recovery and trying to get things right. I took a break from Operation Clean and Managing Me. I slept entire days away. I also stopped eating normally and relied heavily on protein shakes (I’m back on [vegan] protein powder per the Miyagis). The only reason my parents tolerated this is that I was obviously distressed pre-Oregon. CMD looked at my tongue and knew something was wrong. While my home exercise schedule was thrown off exercising with a pro helped a lot.

We got here on Ed’s Birthday – April 7. I slept for about 2 weeks after that. But I decided that I should start “working” soon. So I got a notebook from CVS and scribbled my to do lists. The first page was reserved for “Priorities” – e.g.

1. Recover from OR
2. Run on the AlterG
3. Get stronger, build stamina for next ENT appointment (so my cords look good and no one wants to touch anything)

After I started exercising more and running I started carrying myself differently. I’m working on core strength for my ADL’s, but it’s also important for the kind of lifestyle I’m aiming for.

I gave a short devotional for some ladies here and I was strong enough to practice and hit my time targets (almost). At the meeting I sat upright and concentrated on breathing. My last ST got in my head re. the “residual air” problem, and Coach R talks to me about leveraging air for greater exertion. Trainer D just tells me to breathe so I don’t pass out, throw up, or cry.

My lawyer, K, said my voice was stronger when he saw me in Oregon (his family had visited us in MD the prior year). After I spoke to the ladies, Miz A told me there was a big difference bw how I was able to use my voice this year vs. last year.

223. I Found Grace in the Valley

Additionally, ORFR is now about pain management. I have less pain now :), and there has been no more bruising since I started, although I’ve made significant gains in distance and speed.

So I’m making good progress in getting back on track. CMD had suggested massage as an alternative and Boo Boo was able to recommend two therapists. I was sad last year when I regressed. But this time around I made a game plan. Actually, I told it to Boo Boo and she executed it bc I was…erm…a little distracted. Thanks, Boo Boo!

My theory has always been that increasing my lung capacity would improve my voice. I think it’s working. But I’ll tell you what the ENT says next month. My new theory is that learning to run will improve my digestive strength. I told Trainer D (via postcard) that I hope to eat some/more fish. This is in deference to J (Mrs. Trainer D/Mrs. Miyagi) – she is Team Tanimal’s dietician. Sadly, I tried reintroducing fish just after I started feeling pre-Oregon sick, and I was trying to eat 1 oz here and there but I couldn’t keep it down. Perhaps the problem was that I wasn’t keeping anything down at that time, but whatevs.

When CMD looked at my tongue that week she said, What happened?!?!??! So I told her how Trainer D was getting all up in my grill (not J – Trainer D just recruited her to weigh in since she’s got the street cred) re. eating animal products but how I clearly was not ready for them so I was going to tell him to go away. Okay, she agreed tentatively, but don’t hurt his feelings.

We’ve established that the likelihood of his feelings being injured is low, but I explained how I don’t say a lot of things I could say since I don’t want poor Mommy to have to follow me around for the rest of my life, apologizing to people.

So now I’m concentrating on getting stronger and eating appropriately. I’m not doing great at the eating yet, but I am closely monitored. Last year Mommy told me Ai Ai was going to be like the KGB and report back on my diet. This year Timmy has taken to quizzing me regarding my protein intake and sources during the day. As always, prioritizing my Recovery is a team effort.

 

 

 

 

 

359. Running with Myself

When I emailed my PCP about the bruising I said I wanted to run for stress relief. She understood without further explanation. I promised to keep her updated, that I’d run on the AlterG at a lower % body weight, and she kindly reminded me that overdoing things in any context is inadvisable.

ORFR also proves that Recovery won’t end when Rehabilitation does. I told Trainer D that I’m going to learn how to run and you’re going to help me, and within days I had set up an appointment at The Running Gym.

Coach R directs traffic there and I knew I’d have to get past him if I wanted to use the AlterG so I set about building credibility as a patient/client and within minutes we both knew he could help me so I signed up to work with him, not just run on the machine. The first time I ran on the AlterG was great – that night I slept like a log.

At first Coach R told me he’d stay with me if I’d like but I tried to dismiss him cheerily: No, thanks…bye! Thankfully he stuck around anyway since when it came to the point I waffled. So he reached over the console, unweighted me some more and sped the AlterG up. Once I got off the ground he left me alone for a bit. Coach R “gets it.” I must still unintentionally exude the attitude of This is Me and Me time, NOT Me and You time.

Trainer D probably “gets it,” too, but Personal Training is “Me and You time” by definition. So he tells me things about running theory and bodily alignment and I ask things like, Is this an accepted practice, or is the Trainer D method?

One day I was safely zipped in to the AlterG bubble at The Running Gym and Coach R came over.
Me: What should I be thinking about?
Coach R: Nothing. Just relax.

Good answer, Coach R!

As our Oregon trip drew nearer the AlterG became one of the only “safe” places for me. When I’m zipped in I can’t be approached without prior notice – the machine’s perimeter large and I have extra time to note if someone is walking over, unless Coach R is watching my feet through the window in the back, in which case I don’t care. Also, I love that it’s impossible to fall out. If it were I would’ve done it by now, trust me.

Now that I’m at Boo Boo’s house I’m back at The Southern Gym and use their AlterG 3x/week. I asked God for an AlterG to use while staying with Ai Ai and Tim last year and He provided a PT practice 5 minutes away. True story.  PS. If a PT practice has an AlterG they often reserve it only for patients so it was wonderful for me to find one open for public rental so close by.  They had to move out of their building in January due to severe water damage and I was praying that A) the AlterG had survived the burst pipe and B) they’d move back in time for my visit.

229. Flourless “Nutella” Bars

I was the first one to use the AlterG since the flood and their first day back in the building was also mine. Last year my Southern PT didn’t want me to run, but this year I told him about the progress I’ve been making with ORFR and the people helping me, and he was more amenable. The fact that he was also very busy moving stuff back into the office probably worked in my favor, too :).

It’s still a major stress-reliever and now that I’ve gone to Oregon I no longer feel like I’m trying to outrun something. On our first day we had a breakfast date with G, the “Pretty Nurse” in Learning How…vol 1 who pinched me and woke me up in the ICU. When I saw her I immediately recognized her face. Sniff. After that went to the Library where I pushed my chair around the lake in the back.

245. I’m Rooting for You

 

As we made our way around the lake I could see the Old Me trotting along, blithely unaware of what was going to happen. It’s like I’ve been holding my breath for three years and now I’ve finally started exhaling. I’m not breathing regular-like yet, but it’s a start. I feel more tranquil and as I run on the AlterG at The Southern Gym I pretend I’m running alongside the Old Me and we’re talking. This is what I say:

Life as you know it will end on April 7, 2011. A mass of flawed blood vessels has been growing inside your skull since you were a baby. It will rupture and cause a huge stroke. You’ll be afraid because you won’t know what’s happening. You’ll be in the office – your boss, M, will be there, but you’ll ditch him in the hallway and duck into the Ladies’ Room intending to pull yourself together. You won’t make it out of the restroom on your own steam – you’ll collapse. Nobody is in the room when things start happening but the Lord will send two ladies to help you before your body shuts down completely.

You’ll spend over a month fading in and out of consciousness (mostly out). Your dreams will be troubling but no harm will come to you. Your family will fly in ASAP. They’ll be afraid they won’t be in time to see you but they will – it will be sad but there will also be great joy when it becomes clear you’re going to make it. They will take care of you as you heal – you’ll discover that you can still make them laugh and they can do the same for you. It will also be your privilege to regain some skills that will make you feel like a normal part of a functioning household.

As you begin waking up, be assured that everyone around you is trying to help you. Pretty soon, before you think you’re able, they’ll expect you to get out of bed, sit in a wheelchair, and go to Therapy. They know you can do it even if you’re doubtful, and you need to know the things they are teaching you because you won’t be able to walk (or even hold your head up at first) and will have lost many motor skills you used to take for granted. These people were Divinely selected to work with you bc of their kindness and expertise. They will prepare you to fly home to Maryland.

Once you get home the fog will begin to lift and you’ll realize the implications of this event. You’ll need to decide whether or not you still think the Gospel is true, especially given the timing and severity of what happened. You will pray for signs and wonders, but you do not need signs and wonders to believe. Blessed are they who have not seen and yet believe. Everything you need to know is publicly available information you knew about before getting sick. You’ll be cognitively intact – just physically disabled. Use your noggin and tackle the Big Question that needs to be decided before you can begin Recovery in earnest.

113. Going Backwards (Why I like Ps 34)

Once you begin Recovery at home be assured that the Lord will continue to bring you to people with skills and personalities you’ll respond well to. You will be thrilled when you learn to walk (There’s no crying in baseball!) and assume this pace (of healing) will continue until you’re back to normal. This is not true. Professionals will inform you that you’ll never be like that again – don’t worry about it, though, bc the Lord will decide the degree of your healing.  So you needn’t be concerned about the timeline, but it’s safer to make the mental adjustment to saying “goodbye” to your Old Self, anyway. You will face material setbacks but will learn to manage. When you’re out of options the Lord will lead you on a new path that will allow you to pursue Recovery more aggressively. Remember that many people live in greater discomfort and/or have conditions they will not recover from. You have been blessed with the opportunity and resources to get better – use them well.

Work hard – the biggest gains come in Year 1 but you’ll get better to the extent that the Lord has planned for you. Your job will be to find gifted professionals to help you push the envelope in a safe way. Invest time and money in this process – this is not how you will spend your leisure time – this is how you must live. Learn to identify and recruit talent effectively. I know you like to have things your own way but show respect for their skill and be guided by their expertise.

284. Outlier 2.0

Recovery will be hard work – you don’t get time off. You will not be able to enjoy most of the things you used to – but it’s important to celebrate the small stuff to keep your spirits up and cheer those around you.  Mom and Dad will take primary responsibility for your daily care.  Now that you’ve re-entered their Empty Nest the least you can do is keep things “interesting” for them.

There will be times when you acknowledge that death would have been a lot easier than the business of living. The official stance is that you were very close to Eternity on that day – but even though this scenario seems outlandish and very extreme the fact that God kept you alive by orchestrating the right kind of help for you just in time points to the fact that RecoveryLand is actually a highly controlled environment. True, it often doesn’t feel like it, and there’s a lot of tough stuff to grapple with. You will routinely be afraid and unsure of yourself – this is to be expected given the nature of your injury. But be on the lookout because although the Lord gave you difficult circumstances to deal with look at this is as the situation He chose to trust you with – He’s responsible for seeing it through and has sown seeds for your encouragement along the way. As these seeds grow and come into bloom you’ll be surprised and delighted that the details of your New Life have been so carefully and lovingly planned. Remember to thank Him that you can trust Him with your happiness.

Don’t be scared. It’s going to be okay.