Happy Father’s Day 2014

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Happy Father’s Day, Tanpo!!  Father’s Day is this Sunday, June 15, so please plan accordingly.  FYI PT is the abbreviation for “Physical Therapy” – I get these shirts from 3ELove, a company a friend mentioned at AVMSurvivors.org.  PT is also Dad’s name – so that’s why I think it’s so fun to take selfies of me wearing it and send them to him.

It has been a big deal to me to become a child again in many ways.  I was 30 and completely independent when this happened but now Mom and Dad routinely come to my room around 9pm and order me to go to bed.  (They’re right, BTW, an early bedtime helps.)  But one of the things I only really started to appreciate as an adult, but that I truly received the benefit of as a child, is that I have always been able to ask my Dad hard questions.  Not everyone has that kind of resource living under the same roof.  Thanks, Dad. xo

18.  Dad, tell me that thing again…

The “Spine Place” at Planet Rehab – note the fun spine artwork

I went for a nice walk with PT37 in the Therapeutic Garden at Planet Rehab on Thursday.  Leo the Cane stayed behind in the gym since one of my goals is to walk sans assistive device, so we’re practicing.  Now I know I said it was a goal but I kind of assumed we were going to work up to it.  Mommy, however, has allied herself with PT37 and now just hands her Leo when we meet in the waiting room before Therapy.  Anyway, the weather was so beautiful and there were nice long pathways that were also wide – perfect for fitting a wheelchair or two people (one with an abnormally wide stance, like me).  After a long downward slope we came to an outdoor staircase.  It was actually more like 4 mini-flights and PT37 just said three words:  “Up the middle.”  I tried to hide my horror, but I think she sensed it since she assured me that she was right beside me, and I could feel her holding the gait belt firmly in back of me, so there really was nothing for me to do except follow instructions.

If I ever hesitated at The Place I’d hear PT6 start talking and I’d look at him out of the corner of my eye since turning my head entirely is risky in that if I’m not looking where I’m going the likelihood of falling increases exponentially.  “I’m still with you,” he’d say, or some variation thereof, but the rough translation was always, “Get a move on because I won’t let you fall.”  I could usually sense the couple of fingers PT6 kept on the back of my gait belt, but if I couldn’t I’d peer into any reflective surface we passed to verify his location.

I once heard OT6 coaxing a patient out of his wheelchair.  His session was after mine and I could see what was going on from my vantage point on the recumbent bike.  He was sitting back in his chair, refusing to budge, and OT6 told him with great conviction, “I promise:  I will not let you fall.”  I think twenty years of experience lent her voice credibility and pretty soon that man was out of his chair, pushing that giant shopping cart across the gym like I used to do.

So the promise of fall-prevention, or just the mere knowledge that a licensed professional is standing next to me has been enough to get me to do all sorts of things in Therapy I’d never do otherwise.  This pattern became more prevalent when I became an outpatient.  As an inpatient I think fall-prevention was more implied than spoken, plus I didn’t really care at that point – I just did as I was told.   We were busy doing things like sitting, standing, and steering a walker while keeping it on the floor, so the risk factor was lower in general.  When I returned to Therapy at The New Place in August one of the evaluation tasks was a “Dynamic Gait Test.”  This included walking and then turning my head left/right/up/down when PT30 said so.  When she explained the instructions to me my face must have been like, Ummm…I think you’re insane – because PT29 immediately put her clipboard down and told me she’d hold my belt while I did this.  That was all I needed to hear, and I immediately focused on walking down the hall without any further ado.

I haven’t felt fear like what I felt about learning how to walk, or how to climb stairs without holding on to anything, since I woke up in the 2nd Hospital.  I wasn’t lucid at that point and I had no recollection of Mommy telling me what happened for the past month+ so when I woke up I was really confused.  I was so scared I’d say anything to delay my parents’ departure for the night.  Once I said, “Dad, tell me that thing again about ‘Immanuel, God with us.’”  I knew Dad had been enjoying a meditation on this subject and had shared it with me the day before in an attempt to show me how I didn’t need to be afraid.  Tanpo drew a chair up to my bedside and settled in and I triumphantly rested in the fact that I had gained an extra 10-15 minutes.  (Side note:  Mom says she had no idea how naughty I was until I got sick.  I’ve always known my capacity for naughtiness.  I think it took some skill to hide it from my own mother for 30 years!)

Now that I’ve moved beyond that early stage of fear and disorientation I’ve realized that aloneness is still an anxiety-trigger for me, but knowing someone’s got your back is a powerful antidote.  If I ever lift the curtain (even just a little) on how painful it is for me to watch life pass me by while I clutch my stuffed horse (no offense, Ed), even the people nearest to my heart don’t know what to say.  I don’t blame them at all – I certainly wouldn’t know what to say, and I’m not sure if there’s anything really to be said in a situation like this.  I’m just grateful for their presence and their willingness to play my game of, “Let’s pretend nothing happened!”  So yes, this situation has been incredibly isolating, but I just have to remind myself that I’m not alone.

Matthew 28.20 “…and lo, I am with you always, even to the end of the age.”

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373. Breakfast of Champions

 

I made this picture for Boo Boo.  I love how the cupcake is winking at me.

I made this picture for Boo Boo. I love how the cupcake is winking at me.

 

Trainer D often demands, Did you have a good breakfast? and What did you eat? One day I replied sweetly, A cuppy-cake [smile/lopsided grin], and then I was gonna have some oatmeal but I skipped to the brown sugar – straight up out’the box.

🙂 FYI this is how I roll 80% unfiltered. I assure you I was a real treat to work with right when I woke up and was 99.9% unfiltered.

Around that time at RIO (3rd Hospital), a friend visited and slid a 3-pack of my then-favorite gum on my nightstand. He showed me the ropes of A/V duty at church and one Sunday we had to be there early to set up. Neither of us had eaten breakfast so I gave him some gum (Trident Stripes – strawberry/orange). That’s right, T, I said, Breakfast of champions!!

I didn’t know if he was real at that point in my hospitalization but I recognized my favorite gum and I appreciated that he remembered what I liked.

A favorite part of my Oregon trip was communicating to people that I remembered details of my Old Life that they had had a part in, and to express my appreciation. The first person I saw at RIO (3rd Hospital) was not one of my therapists – it was the Resident Hair Braider – the OT routinely enlisted to braid patients’ hair when occasion required. On the morning I flew home M (OT3) summoned her to French braid my hair for my homeward bound trip. When she entered my room I greeted her – Hi, A.

You know my name! She was impressed bc I’d only seen her a couple times before. When I saw her in April it was my turn to be impressed. I saw the back of her head as she disappeared into a stairwell but I called her name in a questioning tone. She took one look at me and instantly remembered. This was notable since I had not been her patient and I looked very different when I stayed there. Let’s just say that the transition from bedridden to not bedridden was a rough one on a whole lot of levels.

After three years I was able to tell her that her braid had lasted all day and night – after the trip my family had somehow managed to get me inside the house and into my downstairs bed (I was still wearing my airplane clothes and hair, but was so wiped out I didn’t care). One of the ways I steeled myself for the trip was by telling myself I needed to go to my hospitals in order to thank people. A lot of thank-you’s remained unspoken – e.g. thank you for saving my life, for teaching me to sit up, for being kind to me when I was afraid, for believing I’d wake up even though it didn’t look too good at the moment. But the thank you’s I did say, like for that fantastic French braid, and to my friends from work and church, were heartfelt and I hope my peeps were glad that I remembered their contributions to my Recovery.

308.  No Sign of Weakness

308. No Sign of Weakness

These days I’ve started hanging out with people who belong on the front of a Wheaties box. Well, maybe not CMD. She’d be on a box of chi-strengthening herbs. But it’s not their Wheaties-candidacy I value the most in them. True, the nature of my injury (its severity and the opportunity to recover) requires a sky-high skill-level (or it could just be that I’m picky, but whatevs), but I’ve found (note: in my individual experience) that personality fit often trumps specificity of training.

250.  Learning How to Walk

250. Learning How to Walk

While I recognize their professional expertise it’s the small things outside of their job description that offer me the healing touch of human kindness. Although I’ve worked with absolutely fantastic neuro specialists in the past the common denominator among the people I’ve worked with successfully is two-fold: 1) They know how to laugh, 2) They are nice.

I’ve learned that I have a greater chance of getting what I want if I present my credentials in the way I wish them to be interpreted. Hence the posturing of RecoveryLand. I’ve been told that one of the biggest differences in my post AVM personality is that I used to be all about the presentation. (Apparently I was able to exert an incredible amount of self-control then.) My instinct is to still try to present myself as strong, capable, ready for action, etc. since this kind of attitude invites a higher level of rigor, but sometimes my body parts don’t cooperate – I have a motor skill malfunction or my tremor chooses an inopportune time to distinguish itself. I know from experience that an Occupational Therapist would sit there until you complete the task. But these people, who do not hail from the (acute) Rehab world, see my weakness and intervene.

They don’t make a big deal of it – they don’t comment at all. And I’m so busy trying to cultivate a certain image (Let’s get to work, people – there’s no time to lose.) I don’t have time to be self-conscious when a deficit highlights itself. But in the same way that I appreciate when other people remember my preferences I will always remember these small acts of kindness and think of them as proof of your skillfulness as a professional and as a person.

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10. I got voted off the island.

Originally posted 10.11.12 I told my first neuro-psych (at Therapy Boot Camp in OR) that this was like “a really bad reality TV show,” and I stick by that assessment.  He said he wanted to hear more about this “reality TV show” idea, and I must have obliged back then, but the notion has evolved in the ensuing year and a half, and really hit home Tuesday when I got voted off the island.

This whole experience is like Survivor:  The Brain Injury Edition.  I’ve actually never seen Survivor and am not implying that it’s a good or bad show – it’s just that the show has made it into American consciousness to the point where it’s an easily recognized reference.  My parents and I are the only contestants, and since they are the Mom and Dad they hold immunity all the time.  If anyone is getting voted off the island, it’s me.

Dad drove Mom and me to Planet Rehab on Tuesday morning where I met PT37, who is going to treat me now since PT36 is moving home to OH.  We then had a lovely lunch and made it back home around 2.  I had announced my intention of accompanying Tanpo to his first Speech Therapy session that afternoon at lunch.  By the time I had visited the little girls’ room and had a decaf espresso, Mom informed me that she and Dad had overruled and decided I was going to stay home instead of going to ST. It was either that, she explained, or stay home from Tuesday night meeting, and I have lived at home long enough to understand the pecking order.  So when I was voted off the island, I went upstairs, said “hi” to Ed, and promptly fell asleep.

It turns out Tanpo came home late from ST, so we stayed home from Tuesday night meeting anyway and missed GSK (sorry, GSK!).  The therapist sent Dad home with some papers, one of which contained very clear expectations for these Therapy sessions.  Basically, Tanpo is required to show up for therapy multiple times a week to learn the “healing gestures” that will preserve his throat and help him survive the “vocal rest” period mandated by his surgery on 10.24.  I have no idea what “healing gestures” are.  My idea of a “healing gesture” is the apple crisp Mom made last night.  (It was SO good, Mom.)

Of course it all comes back to food.  They occasionally served some kind of fruity crisp thing at Therapy Boot Camp in OR (the 3rd hospital, where I was eventually cleared to eat a regular diet).  I was also voted off the island there, but Mom and Dad weren’t used to overruling me, yet.  Thankfully there were many therapists, doctors and nurses willing to help.  I attended a Memorial Day BBQ the hospital held for the patients on the Monday after my arrival.  I had no desire to go to the “hateful BBQ” as I referred to it mentally.  It was a very nice event, I assure you, but I was protesting my residency in the hospital in general and was not in any mood to participate in any group activities at that point.

Eating restrictions seemed to be a little relaxed, although there were plenty of staff members on hand to help if you were in distress.  So I nibbled on some fruit salad and a hamburger patty and then asked Mom and Dad for some potato chips.  Dad immediately trotted off to get a bag of chips, but when he returned there were no chips in sight.  One of my long-suffering recreational therapists, L,  slid into the seat next to my wheelchair.  She apologized profusely and told me that she had informed Dad that she was going to be the “bad guy” and tell me that I couldn’t eat chips yet since I was still on a “mechanical soft” diet.  Apparently the eating restrictions hadn’t been relaxed after all, and several sets of eagle eyes were scrutinizing what patients or caregivers picked up off of the buffet line.

Later that day ST4 appeared in my room to give me another swallowing test.  She must have heard about the potato chips and felt sorry for me, so she came to see if I could eat normal food safely now.  I passed the test and she referred to me as “Dorito girl” from then on.  As a sign of progress, I put the picture of potato chips on this post because they were part of my lunch a few days ago.  The big news is that Mommy left me at the table for a couple of minutes while she bought a loaf of bread and so I munched unsupervised momentarily.  It was a big step forward for me, so I documented it.  Dorito girl rides again!

348. What’s this going to look like?

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Last week I was on a table at The Gym and I suddenly recalled the ceiling tiles at OHSU. There are many things I “saw,” but it took time and photographic evidence for me to understand that many of those things were real. I mostly saw the ceiling in the early days (when I was not seeing the inside of my eyelids).

My social worker at The Place once asked me what my first memory was and I told her about the Pretty Nurse who pinched me. I can still hear her encouraging voice calling me back to the land of the living. Voices might be even more upsetting for me than seeing the ceiling now. The sound of voices, muffled bc of my hearing loss instead of the initial haziness, still catches me off guard because I get disoriented more often than I like to admit.

277.  Wake Up Call

277. Wake Up Call

The moment at The Gym was pretty bad. But I held it together and I was the only person who knew about it. I almost told Mommy about it at teatime but retreated, telling myself, It doesn’t matter. I’m supposed to be putting all these things behind me, see. This is the No Sign of Weakness principle in living color.

But you know what? It DOES matter. And the No Sign of Weakness principle is quickly going the way of my compartmentalization strategy – it’s no longer a viable coping strategy – and once I informed her 48 hours later Mommy told me I should be telling her these things.

When I left Oregon I still did not buy in to the idea of brain injury etc. I passively allowed events to unfold on discharge day just to see what would happen. Yes, I went to church one last time, but I didn’t understand what was really going on. There was no closure and I never said goodbye to the people/places I lost the day my brain bled.

One of my neuro-psychs told me that it can be really hard if you’re cognitively intact but physically disabled since that means you’re probably going to sit around and think of what you’ve lost. I do think of it a lot, mostly when I’m supposed to be asleep.

As I’ve started writing I’ve decided the basic reason for why I do this is that God saved me from a lifetime of anger and bitterness and that is worth talking about. Friends have told me that the miracle isn’t so much that I lived (although polls indicate my survival was at least notable), but that Mommy doesn’t have to keep me locked in my room so I don’t harm myself or others. (This is the Bertha Mason principle as explained by J – another English Lit major.)

So the question of bitterness was answered definitively for me on Decision Day | The Turning Point. It’s a good thing, bc I’m saltier than I used to let on, and I’d be standing here telling people, I DARE you to try and convince me otherwise. (PS. I’m more fun now. Ask around.)

The thing is that sometimes I get sad and tired. But this isn’t an unfortunate episode in my life. This is my life. My writings’ frankness can be TMI for some bc they feel for me so much they are uncomfortable to “hear” me speak my mind so freely. Not bc they are not in agreement with the principles I espouse, but bc if I hurt, they hurt. It’s a good thing Tanpo doesn’t read this. Xoxoxo. He doesn’t need to bc he’s living it!! Heh heh.

On the other hand, frankness speaks to a wider audience. It’s the concept of recognition – there are moments of resonance when people read what I write – not all the time, but consistently enough for me to keep on doing it. People will often read my blog/book if and when they need to. If I know them they might tell me about it or else I’ll wake up, look at my WordPress stats and chuckle bc I see that someone read my entire blog (or close). I can hear the click…click…just one more….and then Okay, I really need to stop now.

As I’ve “met” people I’ve been asked for Recovery tips. I’m like, That is the sweetest thing ever that you think I know how to do this, but I’m totally making this up as I go along. True story.

But seriously, I’ve wondered how it “looks” when I’m tired and sad. Given what I believe, what kind of testimony is that? As I was struggling with this question this weekend I remembered an email I got from a lovely nurse from Vibra (2nd Hospital). In my “Memoirs” she’s known as “Anne” (p.36). She sent me a note after I sent a card to Vibra last summer. Boo Boo used to call her at 6am bc Anne was my night nurse. She was also the first person I asked for help bc I was in a lot of pain and I had just figured out how to use my voice. Prior to that I thought the words help me a lot but it was only a mental refrain.

165.  How to Get a Heart Tranplant

165. How to Get a Heart Tranplant

Based on Anne’s recollection – of the absolute scariest part of my inpatient life, hands down – my vulnerable and helpless state did not compromise the image I would have wanted to project had I been in control of all my faculties. “Powerful” was the word she used. Wow. When I read that I couldn’t even finish the email because that word knocked the wind out of me. I had never considered her perspective – I only remembered that I felt more comfortable with her around and that before Mommy would leave for the night she’d tell me she’d spoken to Anne and extracted a promise of attentive “mothering” throughout the wee hours.

Anne also mentioned that my room was always full of fresh flowers and pretty cards. (The picture at the top of this post is of a pipe-cleaner bouquet Karine and Ezra made last time they were here.) My fear was so strong in that room it must have been palpable. But there was also a lot of love.

Her summary word, “powerful,” is based on the fact that the staff really felt for me – they saw me lying there pathetically and their compassion instincts kicked into high gear as they exercised their medical expertise. As I woke up, Anne said I was always very accepting of the care they gave me.

That’s been one of the hardest things about this – asking for help, not giving it. Like when I called for backup yesterday. I’m still not sure what this is going to look like when all’s said and done, but I’m confident that it’s going to look good. Thanks for being a part of this.

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346. Gory

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Once I woke up at RIO (3rd Hospital) I got a shot every morning to keep me from getting a blood clot. My morning nurse was often the nice lady who admitted me and she was always apologetic about poking me in my tummy. I didn’t really care, though, since I was too loopy to understand what was going on, and the ministrations of several other nurses and phlebotomists had hardened me to the process. This was much easier since the shot went in my abdomen and there was no need to find a vein.

One morning my PT, A (2), arrived to pick me up before I had quite finished breakfast. I was ready to be done with whatever was on my plate but Nurse S was not letting me out of that room without administering the anti-clotting shot.

A, she addressed him with a very serious voice, avert your eyes. This is going to be gory.

A fixed his gaze elsewhere in a doggedly gentlemanlike manner while S stuck the needle in my belly.

All done! She worked quickly and I was free to go about my business for the rest of the day.

Her funny description of the anti-clotting shot procedure still cracks me up bc in the grand scheme of things it was SO not a big deal but even then I appreciated her vigilant attention to my modesty and A’s willingness to play along.

When I take in the scope of what happened, though, I’m willing to admit that it’s grosser than what I could have ever imagined. We were at the supermarket one day and Mommy asked me if I wanted some XYZ. No thanks, I said, I need those like I need a hole in the head.

You’re not allowed to use that expression anymore, Mommy told me. (I have a soft spot on my head where the patch of skull was not replaced. If I touch it by accident it always grosses me out.)

The actual surgery must have been gory, but Dr. SJ claims that surgery can actually be a very beautiful thing since it displays how the body is knit together. Mm hmm. I’ll take your word for it, SJ. Prior to the surgery all the blood was unleashed under the surface – yes, there was a lot of bleeding that flooded my brain but only three little drops made it onto my clothes.

All dressed up with no place to go. | Trust me, I'm a doctor.

All dressed up with no place to go. | Trust me, I’m a doctor.

This might have been while the EMTs were attending to me when I first collapsed at work. The only reason I know that is bc my sister told me they had to throw away the turquoise wrap I was wearing bc it had little drops of blood on it. That was the only thing (besides my blouse and sweater) that did not survive the incident.

I would not interpret three drops of blood as “gory,” but underneath the surface it was truly harrowing. It’s the same way with so many people that I meet. The surface looks ok – placid, even. We’re trained to present a socially acceptable exterior to each other. But you never know what’s going on below.

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326. Intentional Visiting

Intentional Visiting | Visiting 101 part 3| Ann Ning Learning How


I so enjoyed going to the Rise Up Conference. I heard many edifying messages, but I was particularly blessed by Mr. T’s talk on “Visitation” – I’m referring to it here as “visiting” since “visitation” might be a culture-specific term not immediately understandable to everyone. I wrote a two-part series on How to Visit a while ago (linked images below), so let’s say this is Part III.

161.  Visiting 101 - part I

161. Visiting 101 – part I

166.  Visiting 101 - part II

166. Visiting 101 – part II

The Visitation seminar “worked” because Mr. T has major street cred in this department. His recommendations were born from vast experience. He and MMN were the ones who showed up super early at the hospital when H and J had their tonsils out. I was also privileged to receive a visit from Mr. T the first time I was hospitalized as an adult.

I caught pneumonia as a freshman at Georgetown and when I went for an x-ray they saw that my lungs were cloudy. So off I went to The Place’s main hospital and stayed for a week. There was no manual extraction of fluid, so my job was to just hang around, eat things, and get better. I called Mrs. R. from my hospital bed – “Hey, Mrs. R – guess where I am,” I rasped cheekily. Mr. T was in our area that weekend so he came with a bunch of my friends for a brief visit.

The most important notion I gleaned from his seminar was the idea of intentionality in visiting. I’ve thought about it more, and one of the biggest challenges of visiting is knowing what to say.

When I first got sick my friends consulted each other regarding what to write in the cards they were sending me. Sorry, I’m tired and don’t want to think of a euphemism: My brain had just bled and they didn’t know if I’d live or die. Writing a card was the only thing many of them could do (although later, some of them actually flew out to OR to see me – thanks, guys!). I often have trouble wording a birthday or thank you card – so this must have been a real challenge. Just remember, one friend said, you don’t know when the card will get there. Another friend asked Magic B what to write and he just said, Oh, I already wrote mine – I told her she has NO CHOICE but to get better.

Okay, that’s one way to address the situation. I remember poor Magic B was quite broken up the time I caught pneumonia so my brain bleed must have really upset the apple cart. That’s why I told him, Don’t be sad, k? the first time I saw him at church a few days after I flew home.

Anyway, back to visiting…a huge hurdle is “What do I say?” Mr. T recommended that you prepare something to share and be ready to pray together. He also emphasized the importance of being mindful of the time – for someone who’se really sick you could call ahead to see if they’re receiving visitors and reassure the family, I’ll be there for X minutes. That way you won’t overtax the person who’s ill, you’ve set the family at ease by managing their expectations, and you must decide what you want to say in that X minutes. (PS. Visit length is guided by the context and your sensitive evaluation of what the visitee can handle.) IMHO if you’ve got a serious time constraint you’d better not fiddle around – just go straight to the Word bc that’s what they need.

The assumption here is a basic proficiency level in scriptural encouragement. To be able to share something from the Word you have to be in the Word yourself. Ideally, you’d have a variety of things ready to share as the occasion requires. But don’t be intimidated. This is like learning a foreign tongue so you can travel abroad. Impeccable grammar and a broad command of illustrative language are not requirements here – important ideas are often communicated in monosyllables. I’ve advocated being ready to share or read, but I haven’t thought about intentionality until Mr. T mentioned it. I will add, though, that it’s crucial to listen to the leading of the Holy Spirit. You don’t prepare something and then insist on sharing it regardless of the circumstances (nor was he suggesting that – I’m just spelling it out).

Automatically adapting your own experience and/or what you’ve prepared to share to someone’s situation could be dangerous. Even if you’ve undergone a very similar trial it’s safest to understand that it is not identical and you cannot know what it’s like to be in their shoes at this moment. If your experience really is relevant and you do share, I’d recommend some verbal hedging that acknowledges that your situations aren’t the same – there are likely transferrable concepts but hedging will increase your credibility and the likelihood that your statements will be favorably received.

I hope these posts demystify visiting and help you get started before it becomes a lost art. It’s not scary, I promise! The real starting point is to make friends. That way, if someone’s in a position to be visited you won’t feel weird about it since they’re your friend.

Before I woke up R used to visit me and she’d sit by my bed and whisper, “Don’t be scared, Ning.” (Sniff.) When I started to come around I recognized her from my Monday Bible Study and it didn’t occur to me that this new context was very strange indeed. I forget if I told her this, or if it was just mental, but during all those visits I remember thinking, “I’m glad it was you.”

22. The 7th Hospital

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One year ago we Tanpo had surgery/a biopsy for a growth on one of his vocal cords. Today I was supposed to have an appointment with the ENT who operated on him for a (benign) bump on one of my own cords. The question is whether or not she will recommend additional ST or surgery. I won’t know until I reschedule my appointment since I’ve already got to see 3 different docs this week (just ongoing care check-ins) and Tanpo suggested (strongly) that I cancel today’s appointment because having 4 this week would just be too much fun. 🙂 I am, however, glad that I will be treated by Dad’s ENT. Mommy feels slightly better about leaving me momentarily unattended if I am already in a hospital, and when Dr. G came out of surgery to update us on Dad I was alone since Mommy had stepped outside. Dr. G gave me the best news we’d had in a long time when she told me that the growth was benign.

In my writing you’ll generally hear me refer to 5 Hospitals. That’s because I have not included the very first hospital I went to on the list since I did not spend the night there. I am, however, thankful for what they did for me, especially for how they called Mom and Dad. So to be perfectly accurate, I’ve been to 6 hospitals in the last ~18 months, and this morning (Wed, the 24th) we’re going to the 7th. Of course I assumed if we were going to a new hospital we’d be going for me, but today I am playing the role of “concerned family member” and accompanying Tanpo as he goes in for his surgery/biopsy.

I’ve often thought about how it would feel to go back to a hospital. One might well assume that I can’t stand the hospital and go to great lengths to avoid one. It’s kind of strange, but I look back on my 2.5 months as an inpatient with a mixture of vague fondness and less ambiguous gratitude. After all, I look at those hospitals as the places where a whole bunch of complete strangers took good care of me and I began to heal.

As I first began to understand what had happened to me but was still mentally hazy I mouthed the words, “Help me,” a lot. I thought I was saying them but Mom recently told me there was no sound accompanying the lip movement. I also thought I said/mouthed this very often – to anyone who came into my room – but since Mom doesn’t recall this it must have been a mental refrain since I couldn’t really talk yet.

Once I could talk, I wasted no time in seeking advice on my condition. My NP (Nurse Practitioner) came to check on me one morning and I asked him, “What do I do?”

“What do you do?” he repeated my words and processed the breadth of what I was asking. I think that was the first time I’d spoken to him, so it might have been a bit of a surprise. After a slight pause he explained that this situation was like I had had a huge fire in my house. It had been extinguished but now I had to clear the residual smoke and lift the excess water from the fire hoses. The extent of my recovery, he continued, would be determined by how much smoke I cleared and how much water I was able to lift.

Most of the smoke is gone, but I’m still trying to lift water. In response to the time I looked at Mom and mouthed, “Help me,” she told me that “all these people” – she nodded to the hospital’s hallway – were here to help me, so I should feel good about that.

So this morning we’re going back to the place where highly trained professionals know how to help people. I hoped the next time I’d be going to a hospital would be to visit a new baby (I’m waiting with baited breath for the new S girl and the new Tan boy), but our visit is not marked by such a happy occasion. Nevertheless, it’s good that our visit is going to get the help we need.

This is what happened next:

23. (Option A) “Maybe I should learn sign language.”

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I refused to sit at this table during a coffee break at the hospital yesterday morning, but when it was time for lunch the crowd weakened my resolve and I exercised my rights as a disabled person and parked myself here.

Dad does not have cancer. His PDG was able to excise the offending lump entirely from his right vocal chord (Thanks, PDG!) Dad will be on vocal rest for five days during which he is supposed to maintain a strict silence. He will then return to Therapy and when they are satisfied with his speech technique/abilities they’ll give him permission to exit the vocal rest period.

I am going to try my best to remember that Tanpo is supposed to be quiet for the next few days and not talk to him in a way that will invite a verbal response. My own Speech Therapist here in Maryland (ST3) was a little troubled by how often my lips could move but no sound would come out. “Maybe I should learn sign language,” I mused one day.

“No,” she immediately vetoed my proposal, “Use your voice!”

When I sat down in her office after OT, ST3 would wave her hands around the room and tell me solemnly, “You have entered the ‘No Whispering’ Zone.” Whispering, you see, is actually a form of vocal misuse. See? I totally listened in Speech Therapy.

One of the hardest parts of the therapy experience was explaining to everyone (who was naturally and very kindly concerned) that I’ve always had a soft voice and it has never hindered my progress in school, work, or life in general. I know it’s weird, but I was asked regularly (probably once a week or every two weeks) if I had laryngitis. “No, no,” I’d assure the person asking, “This is just my normal speaking voice.”

I eventually convinced ST3 that I really was comfortable with the volume of my voice and so declined to work on it anymore. This was after she’d established a habit of hunting down my next therapist to inform him/her that I was not allowed to whisper during my next session, either. So ST3 ran a tight ship (but I wore her down!). After I didn’t have to “yell” into the decibel-meter spider anymore I could just focus on the brain-teasers etc. ST3 gave me, and I quite liked them. The sense of relief that attended the end of my volume training was marked.

I felt the same relief yesterday when we got the good news, except it was so much better. I wrote two versions of this post (Options A and B) and this is the one I so desperately wanted to go with. But even though we got good news there are so many people out there who got bad news…this week…this month…this year. If the doctor mentions the word “cancer” in the same sentence as one of your family member’s names your blood runs cold. I know since that’s what happened when Dad had cancer (nasalpharyngeal) in 2003.

At that point we were all blissfully unaware of what it was going to take to get from point A (diagnosis) to point B (completion of treatment). Dad’s body was changed forever (the scars/burns from the radiation were readily visible), and our hearts were changed forever, too. The one thing that didn’t change was God’s plan for our family – that’s an idea I got from JCJ’s mom, R, who was paralyzed from the chest down after a coffee bean truck struck her vehicle in rural Ethiopia many moons ago. So for everyone out there who is dealing with news they did not want to hear, I’m sorry this is happening to you…and I’m sending you a hug.

99. Mirror Image

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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 (3rd 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 (1st and 2nd 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?)

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220. I’ve Got this

 

250. Learning How to Walk

Learning How to Walk Again | Platform Walker | Post AVM Rupture Inpatient |Ann Ning Learning How

In a few days I get to celebrate 2 years of walking.  Note that I said “walking,” not necessarily “walking WELL.”  That will come later, Lord-willing, and at this point I’ll take what I can get. 

I wrote to A(6) a while ago to ask him if he’d be okay with being a regular “character” in my writing.  (I tried asking as many peeps as I could, but have opted for no pictures and initials since I couldn’t get to everyone.  Plus I’m kind of weird like that.)  As I told M (37) when I asked her, my intention is to portray Therapy as a positive thing because that’s what it’s been for me.  Actually, I don’t think I told her that.  I think I just said that my intention was for her to have a growing fan base.  I meant the same for A.  Both of them were totally cool about it.  I did tell A that the title of my “Memoirs” is Learning How…to Walk so he’s kind of…important.  But I said we’d worry about the blog first and then cross the Memoirs bridge when we came to it. 

Learning how to walk has been a very popular search topic for me lately.  Apparently there are lots of people learning how to walk as adults due to all kinds of illnesses and injury.  So as I contemplate this 2nd anniversary I wanted to share the “Walking” chapter (ch. 12) from my “Memoirs.”  I reread it for the first time in a while last night and realized that I had forgotten some of the hair-raising anxiety I felt when I was trying desperately to walk, but couldn’t.  I was also struck by my statement, “Every step is a choice.”  I would still often rather just lie down and cry, but lying down and crying haven’t gotten me anywhere in the last two years so I have to keep on walking.  I have the opportunity to be mobile, so this train’s not a-stoppin’ Choo choo.

PS.  To my friends in various stages of walking attainment or separation, I’m rooting for you. 

12.  Learning How To Walk

Before I could learn how to walk I had to learn how to sit and then how to stand.  PT1 and PT18 used to make me sit on the side of the bed at the 2nd Hospital.  At that time I still didn’t know what was going on.  I just remember their faces and being convinced that the bed was really spinning like a merry-go-round with my feet dangling through a hole in the middle.  The force was so strong that I was sure I would be thrown off any second so when my allotted time was up one of them would hold me by the arm and let me down gently until I was lying on the bed.  It was the only safe place, as far as I was concerned, and it still is, since if I’m already lying down I can’t fall.  Later in my stay, PT14 and PT15 would come and put me in a chair.

73.  Stronger

73. Stronger

When I got to the 3rd Hospital, I had never sat in a chair for more than an hour before, and I had certainly never sat in a chair without a headrest.  Now I did both since the wheelchair I used on my arrival was the only option until PT2 built out an old dinosaur for me.  During some of my first physical therapy sessions PT2 had me propped up in a standing frame I called “The Vice.”  He’d be busy taking my blood pressure to make sure I could tolerate standing, and I’d be there thinking, “Yep, he’s crazy,” because I thought I could still walk at that point.  It turns out that he wasn’t crazy – he was just careful.  After he was convinced that my body could withstand The Vice, PT2 wrote the order for me to stand in it every night.  So after dinner my nurses faithfully wheeled the frame in and strung me up in it.  It was painful at the time, but I could stand for abnormally long periods afterwards.

When I first learned to use a walker I got plenty of lectures on how to do it right, consisting mainly of phrases like, “Use the walker only for balance,” and “Keep the walker on the floor.”  My instinct was to pick the walker up and position it in the way I wanted when we came to a corner, but that isn’t how you’re supposed to do it.  My walker would be screeching along because I was leaning on it so much, which is why my therapists encouraged me to stand tall like a tree and resist hunching over it.  Apparently their advice took root because by the time I got to The Place, PT8 told me it was good that I hadn’t developed the habit of leaning over too much.

At the 3rd hospital I met PT3, whose nickname (another therapist informed me) was “The Miracle Worker.”  The fact that she had such a nice manner about her, combined with my obvious need for a miracle, convinced me that I should stick close to her.  I was Learning How to Walk Again | Post AVM Rupture Inpatient | Ann Ning Learning Howwalking with her when I first got close enough to a mirror to see my face.  I was holding one of the railings of a set of bars, and she had rolled a large mirror over to one end so I could see my body’s position.  “PT3, what is going on with my skin?!” I exclaimed when we reached the mirror.  I had other fish to fry at the moment, but all I could think of was that my skincare regimen had been disrupted for way too long.  I have always had problem skin but this was…epic.  PT3 laughed, which made me laugh, and I decided that I had better concentrate on learning how to walk instead of my complexion.

I felt safe in the parallel bars, and spent a lot of time in them at The Place.  I liked the fact that I could grab on to them if I felt myself falling.  Depending on another person was a different matter.  The first time PT6 told me to leave my walker behind and walk holding his hands instead, I asked, “Are you sure?”  Then again,  “Quite sure?”  He answered in the affirmative with great finality both times, so there was nothing for me to do but get up and walk.  I allowed myself the liberty of clinging to his forearms instead of holding his hands, though.  When a similar scene occurred with PT8, he responded, “I’m sure, are you sure?”  So I paused to consider and told him that I wanted to walk really badly, so yes, I was sure.

I knew it was only a matter of time until PT6 suggested walking without holding on to anything at all, and I was scared stiff.  One morning Mom caught me crying in my bed and her maternal intuition told her that it was because I was afraid to walk.  After some quality time with the Scripture and sermons on my iPod I felt calmer and told her, “I know what the right thing to do is.”  For me, that meant putting one foot in front of the other even though I was scared.  I was so stressed out as the anticipation built that my blood pressure would rise ten or twenty points from when OT6 took it at the beginning of our session, to when PT6 took it at the start of physical therapy.  To this day, every step is a choice.  I would much rather lie down and cry, but I continue to walk.

The fateful day came just as I thought it would.  PT6 was very kind, though, and gave me advance notice that he thought we should practice walking outside the parallel bars during the following week.  “Do you have some sort of magic wand you got in therapy school that will make people learn to walk without actually walking?”  I asked.  PT6 said “No,” and told me there was no pill for that sort of thing either.  “This whole situation is so bizarre I figured I might as well ask,” I told him, and continued to dutifully push the giant shopping cart across the gym. Having eliminated any other possibility, I was thinking, “Fine…we’ll do this your way,” rather grudgingly as I pushed the cart.

Knowing that there was one method of learning how to walk, I prepared myself as best as I could.  I was determined not to cry all over PT6, since “There’s no crying in baseball!”  (That’s what Tom Hanks tells one of his players in A League of Their Own.) So I prepared myself accordingly.  Jewelry has always been a strong motivator for me so I purchased a sapphire and diamond band to wear after my first real walk.  I also practiced by walking in the bathroom – the only time I was really alone behind a closed door, although it took several months for me to be allowed to use a bathroom by myself.  Don’t worry, Mom. I was always near a wall I could lean against.

PT6 was stricken by a bad strain of the flu the following week, so while he was making sure he was getting plenty of fluids and rest at home, I took my first walk around the gym with PT16.   She held on to me and stationed chairs every few feet along my path, and when we reached the first one I told her that I had never been so happy to see a chair in my life.     Still, I was waiting for the time when I could walk without holding on to anything, and without anyone holding on to me.  “The only thing worse than walking,” I told Mom that week as we exited The Place, “is not walking.”

It happened in my kitchen.  True to form, I got impatient and decided that I was going to make this walk happen.  We have an island in the middle of our kitchen, and I intended to make my way around it without touching anything.  On my first round I stumbled and needed to clutch at a bar stool, but on the second round I tightened up my core and pressed down with my toes when I felt myself falling, and made it successfully around the room.  “That counts,” I told Mom, and then I sat down to write to Dr. Dogan and the people at RIO to tell them that their labors had paid off.

Besides the fact that I got to wear that ring, the other good thing about walking first at home was that the probability of me crying all over PT6 was much lower.  Since the worst was over I wasn’t scared anymore, and pretty soon PT6 brought out a quad cane (a cane with four feet that stands up on its own) for me to practice with.  The first time, he let me hold one of his hands and told me to just walk without even thinking about it, and I found that I was simply carrying the quad cane alongside of me.  While I was practicing at home with it, Mom advised me that I needed to actually put the quad cane on the floor and use it instead of letting it hover in the air while I took the next step.  As you can see, I found walking with a cane as unnatural as using a walker.

Sometimes when I walk now with my cane I pretend that I’m my friend, M, from the 3rd Hospital.  Half of her body was crushed in a car accident, and the fact that her husband dropped everything to accompany her on the long road to recovery is a strong testament to the kind of people they both are.  M’s loving parents were also there, and it made me feel better to see them if my own were absent.  When I first arrived M was sitting in a wheelchair like me, but a month later I saw her cruising around with her cane in spite of the pain.  I wished so hard that I could walk like her.   I still do.

135 x2. There’s no crying in baseball!

About a year ago Mommy came go get me one morning (I was still sleeping downstairs) and caught me crying in my bed.  Boo hoo hoo!!  😦 I had a full day of therapy ahead and I was dreading it.  This is why:

This is ~30s of one of my first attempts to walk post AVM + stroke.  The lack of self-awareness meant the absence of fear.  Basically, I thought E (1) was nice and I wanted to do anything she said.

The first time I saw my friend A after getting sick was on Labor Day 2011.  I asked Mom and Dad to take me to the GWH conference and I had prepared by clearing my intention to walk “the loop” at camp with my PT.  Although I got my PT’s green light, Mommy had other ideas.  There was also more traffic and bug activity on that very hot day, which I was not anticipating.  In the end, I jumped ship early, and Mom ended up pushing me a little on my rollator (Thanks, Mom!)

When I saw A I was sitting in The Chatterbox (the snack bar) with a lot of ice cream in front of me.  “Look  – there’s your friend!” my nephew pointed across the room and announced A’s arrival.  She parked herself on a bench next to mine and I immediately shared my most urgent prayer request:  “I don’t want to cry all over my PT,” I told her.

Babies have a lower center of gravity since they are small, and that helps them keep their balance.  That’s also why most gymnasts are of a diminutive stature.  At my height and with my brain condition, the possibility of falling and getting hurt when I was already quite impaired terrified me.  My stomach was in a permanent knot for a couple of months as I anticipated learning how to walk.

I did well to remember one of A and her sister’s favorite movie quotes:  “There’s no crying in baseball!”  That’s what Tom Hanks tells one of his players who’s having a little moment in A League of Their Own.  If you recall, this is the movie about the success of an all-women’s league during WWII – when many men were in the service, and women stepped up to the plate and preserved America’s favorite pastime.

The crushing anticipation almost did me in as I knew the time for me to walk was drawing closer.  I did my best to remember, though, that there’s no crying in baseball, and am happy to report that I never broke down during PT as I had anticipated.  I suppose I cried it all out beforehand.  And celebrating with my walking ring helped.

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