484. THIS is why I do this

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At the end of 2014 when things started going downhill but before he called me out, Trainer D started getting in my grill about wanting even more information to feed his data-driven approach to Training and started talking to me about his favorite metabolic rate test – it involves wearing this crazy mask thing that measures your breathing, etc.

448.  Called Out

448. Called Out

I held it together while at The Gym but I cried for a week as I struggled with the memory of one of the first times I sat in a chair. I consoled myself by pre-ordering a Fitbit Charge HR (the one that measures your heartbeat through your wrist – you don’t need to wear a chest strap) so I could provide more data if pressed sans mask and when I showed up at the gym again I explained the situation to Trainer D with tears in my eyes. I don’t want to do that test, D…bc I make jokes about thinking I might die during PT but the first time I really thought that I was scared bc I couldn’t breathe and I lacked the verbal skills to tell anybody.

I haven’t done that test but now, 5 months later, I did the thing I vowed NEVER to do and got on The Gym’s body fat scale because Trainer D was talking about wanting more data again. I have told both Trainers, I am never getting on your body fat scale, nor will you ever approach me with a pair of calipers.

I made Coach R this reminder.

I made this for Coach R’s benefit.

But as is my custom, I seem destined to do things I never thought I would – e.g. that horrifying StairMaster experienceand we measured my body fat. (PS. Calipers = Still Not Okay.) So Trainer D got geekily pumped to go home and map out my new Training Plan and I lost no time in reporting to Smurfette and getting the ball in motion to see her professionally since I need some additional assistance with my eating “disturbances.”

Let me just state again that I’m not Training for Training’s sake. That’s the point of this post – I’m not just talking about body fat for kicks, promise. There’s some major method to this madness and as I’ve indicated before, more muscle protects my joints – which are increasingly showing signs of wear since they move in a way that is abnormal. But hey, I am grateful to be moving them at all. I work hard at this so my voice, vision, stamina, balance, spatial awareness, and overall carriage continue to get stronger.

I saw Mrs. P a few weeks ago at one of CP’s big design events. (He’s my friend who inspired the “Food for Thought” Business series.) The event was swarming with people eager to see C’s design, hosted in a beautiful private home, not a public ADA compliant space.

Food For Thought When Launching a Business Series | Ann Ning Learning How

But I did it – I survived a rare evening event and it was SO worth it. Mrs. P (C’s Mom) told me how she was hilariously struggling to get her son the artist to look at the pretty spreadsheets she had built for his business, and at dinner she said, You look amazing.

Side note: if you haven’t seen me in a few months or more, you see more dramatic changes and your language is likely to be stronger.

Me: Thanks, Mrs. P – I’m telling you, it takes a village. I have a team of highly trained professionals for all this. [Pointing to myself up and down.]

It’s true – I get a lot of help and invest all my time and money into Recovery so I can do things like go the Design House.   I took some squatting breaks bc my hips were bothering me, but I’ve been trained to do what it takes to last longer and move more efficiently, and J told me, You were moving really fast on those stairs.

Recently I was honored to speak at the IFI women’s conference – Mrs. D made it easy for me with an “interview” format and predetermined questions. Mrs. R was supposed to be my partner that day and I was SO Excited. Mrs. D didn’t know that Mrs. R and I go way back when she first asked us to do this. Mrs. R was as glad as I was to be asked, but she wrote me a nervous email about how she hadn’t done this before.

I laughed and tried to calm her – Seriously, Mrs. R, I knew this sort of life was POSSIBLE bc I watched you do it for over a decade.

I kid you not – I knew what this looked like bc I started hanging out with Mrs. R when I was a freshman at Georgetown, and GU was her hospital. She prayed me through undergrad, my early working life, and Business School (and beyond). Thanks, Mrs. R!

And at the conference I’m telling you, she was phenomenal. (Side note: she had been hospitalized like the week before, or something.) It was Words of Life on steroids. You can’t speak with Power unless you’ve lived it. And she’s lived it, and I learned about it not because she sat me down and talked to me but because I spent my early adulthood watching.

Right before we started I walked down the center aisle caneless. I saw myself like in a movie – I could hardly believe I was really walking, but I made it safely to the front and sat down. Later, I told the group – No one told me I had to run. I decided to do that by myself. And THIS is why I do it.

The ability to participate in events like this and have the mental stamina to prepare appropriately is exactly why I pursue Recovery aggressively. But my life isn’t spent just “waiting” for the next event. Every day there are small triumphs and things to look forward to.

Last week I cleared the dishwasher in the morning. I do my best physical work soon after waking up. Still, I had to do it in installments, and I had to practice my breathing and bracing bc my back was getting grumpy. But as I took the last dish out of the bottom rack I smiled knowing that Mommy wouldn’t have to do it later. She spent enough time picking nuts and berries out from under my wheelchair cushion and washing my hair for me, etc. It’s taken some time but now I can do more – so I smiled again and thought, THIS is why I do this.

Ann Ning Learning How |Nonprofit books on Amazon!

 

 

145. Illness, Body Image, and Why I Eat the Way I Do.

Strawberry Shortcake Muffin, Flourless, Oatmeal, Added Sugar Free

For a while I didn’t quite believe I was getting heavier. I was like, There’s no way God would make me sit in a wheelchair AND make me get bigger. Yeah…There was a way. And in the grand scheme of things my weight is the least of my issues. My doctors generally don’t prioritize it since it doesn’t look too bad, while my balance and gait are obviously problematic, so they are the first targets for healing. To clarify, I have gained more than 1/3 of my pre-AVM body weight. Let me draw you a picture:

Weight Post AVM Drug-Induced Weight Gain

I do not look like I’ve gained as much as I have. The reason for my gain is probably a combination of a) habitually eating beyond satiety so I could reach my mandatory minimums in the hospital, b) not being able to walk and c) medication. “C” is the clincher – we figured out that it wasn’t just A+B when I gained 7 lbs in one week. We would’ve figured this out sooner but I hid my scale for a while bc I didn’t want to worry about it and my mobility issues made standing on one difficult.

I have made reference to my drug-induced weight gain but have never written about it at length. The primary reason is that I have been scared of hurting anyone’s feelings. If you’re my friend and think, oh my, she must be scrutinizing my size and shape every time she sees me – you’re wrong. I read somewhere that it’s a widespread phenomenon for people to think that their friends are very good looking. So if you’re wondering why you’ve got so many fabulous looking friends it’s because you like them. It’s true for me – I’ve got friends who all look different and all look great.

The other reason is that I didn’t want people to think, Wow, that girl is SO unhealthily preoccupied with her weight. Well, I don’t have much to say in my defense. I DO think about it a lot. At RIO (3rd Hospital) I was largely in la-la-land but I was extremely concerned that I was heavier when I was discharged than when I got sick. There was a scale built in to the bed and my nurse told me my weight in kilograms, and although I did not know if she was real I had no trouble converting the kgs to lbs in my head.

I think about it so much because I thought about it a lot before I got sick, too. I went through a “thin” phase in my early-mid twenties, when I was actually underweight since I worked a lot and was rarely hungry. The thing is that I liked being thin – it was easy to buy clothes and I knew how to dress myself. I then went back to school and gained a LOT of weight and lost most of it when I went back to work (this time in Oregon). My weight loss was not intentional – it was a byproduct of my new lifestyle. I was happy that I was finally fitting into some of my clothes from before I went to B School, and then I got sick.

The main problem with me getting bigger (aside from the aesthetic/vanity issue) is that it’s yet another thing that’s different from what I was used to. I was busy learning how to walk – I really didn’t have extra brain power to spend on learning how to clothe my larger person. It’s a good thing we didn’t bring many clothes home from OR since I can’t wear any of them anyway. I’ve also bought like 6+ sets of “Rehab” Pants (soft yoga pants) since I keep outgrowing the old ones. This is expensive! And I understand that one shouldn’t dwell on appearances too much, but I refuse to go around in immodestly tight clothes.

I have ceased taking all prescriptions but have not been able to lose the weight I gained. My body is still going crazy from what happened to my brain, and not being able to exercise as much as I want to doesn’t help. I do try to eat well, which is why you see strange recipes I think are delicious on my blog. I try to eat fewer flour-based things, which matches the requirements of my gluten-free and celiac friends, and my family’s history of diabetes makes me sugar-wary.

For the record, let me just point out that stereotypes work both ways: Not everyone you see who you think is heavier than they should be is a) heavier than they should be and/or b) that weight due to their life choices. Also, not every thin person you see has an eating disorder. In the event that you come into contact with someone who IS dealing with a weight issue due to life choices or an eating disorder, I recommend just trying to be a good friend – you don’t know all the factors that are feeding into their relationship with food. A lot of people eat the way they saw people around them eat when they were growing up. Others don’t eat as a form of taking control over one part of their life since all the other parts are spiraling out of control. Remember that eating well and living fit takes time and money – it was easy for me to eat fresh/raw/whole and exercise a lot while I was living independently because I had no one else to care for in my household.

I don’t think I’m the only one who thinks about these issues. Both women and men can have body image issues. Add illness into the mix and you’ve got a recipe for discouragement. But I did this once before, and I’ll do it again. This = redefine my relationship with food, be very aware of the kind of fuel I put in my body, and just submit this whole issue to the Lord.

One of my favorite recipe-idea sources is Pinterest. That’s how I found The Dashing Dish. I clicked on “My Story” haphazardly and read about the ups and downs of Katie Ferrell’s (the founder’s) weight. Imagine my surprise when I read the following: Everything finally started to change when I took this to the Lord in prayer. I knew I wanted to glorify Him with this body that He gave me to take care of. I came to the Lord and asked Him to help me. I asked Him to reveal to me what His plan was for me and to show me what I needed to know in order to treat my body right.

Strawberry Shortcake Muffins Dashing Dish Learning How

Wow – that’s just what I needed to hear. Also, I was pleased to find that the Dashing Dish offers not only encouragement, but recipes for things I’d like to eat! Example: I made these strawberry shortcake muffins. The only changes I made were 1) no sweetener and 2) I blended the strawberries into the batter and just garnished the top with a few slices (once I found our egg slicer). I also “frosted” the top of one for my sister since we LOVE to eat cupcakes together.

Strawberry Cream Cheese “frosting”

  • Equal parts Greek Yogurt and cream cheese
  • Splash of vanilla
  • 2 strawberries.

Blend it all (I used an immersion blender). You might want to warm the cream cheese ever so slightly in the microwave to facilitate this. I added some chia seeds to increase the gelatinous nature of the “frosting” so it would sit on my cake better. Since this contains strawberries (a seedy fruit), the chia seeds did not weird me out, but I would not recommend frosting all your cakes at once. In fact, I like these warmly toasted, split in half and then smeared with the “frosting” better.

PS. If you’re a subscriber (thank you!) and did not receive an email with yesterday’s post, please read it! 143. The Listener’s QT

PPS. I really do think my friends are very good looking, indeed. If you disagree, Leo would like to “talk” to you.

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123. Don’t You Care?

This was the first time I heard myself play the piano (I'm still sitting at the keyboard) and I heard what I sounded like.

This was the first time I heard myself play the piano (I’m still sitting at the keyboard) and I heard what I sounded like.

Ji read the account of Peter walking on water on Sunday morning.  At least that’s what I think he read – I’ve had hearing loss so I often fill in the blank with what I think was said.  It reminded me of a favorite passage in Mark 4 – the one the phrase, “Peace, be still” comes from.

Tanpo read the Scriptures to me at night before he and Mom would leave for the evening.  I would often request something and I remember requesting Mark 4.  We never talked about it, but I remembered this since I’ve enjoyed this passage for years and I had a deep desire to hear it again.  Long after my parents left and during the days that followed I’d lie in my bed and think, “He cares.  He cares.”  Because that’s why I wanted Dad to read Mark 4 to me.

First of all, it’s the Lord who suggests, “Let us cross over to the other side,” (Mark 4.35).  Changing locations was His idea in the first place, and idea execution is a non-issue for Him.  I like to remember that me being disabled was His idea in the first place (I was initially a very unwilling participant) and He’s the One who’s going to see this thing through.  Second of all, I like this account because the disciple’s question is so terribly honest.  The wind and waves are crashing around them, and the Lord is asleep – asleep – in the stern.  So they wake Him and say, “Teacher, do You not care that we are perishing?” (Mark 4.38).

Can’t you hear their tone of voice?  They’re like, Hellooooo – we’re all gonna die.  I know that tone of voice since I use it often myself (at least mentally).  It’s not the amazing power the Lord demonstrates as He calms the storm that grabs me, it’s the fact that such a raw question made it into the Scriptures that made me request this passage in the hospital.

In answer to their question, the Lord addresses the situation immediately.  I would love for my situation to be addressed immediately, too, but we’re not working on my timeline.  He then asks the disciples, Where is your faith?  Sometimes I can’t find mine.  Maybe I left it in the pocket of the jeans I was wearing when my brain bled.  Or maybe it is in storage with the rest of my things in that garage in OR.  But no, it’s still with me – along with my family, it’s one of the things I didn’t lose that day.  I just forget sometimes and need to be reminded that He cares.

Hebrews 11.6 But without faith, it is impossible to please Him.

Psst – read this, too!

465. Why is my life like this?

Mmmmmm.  Coooookies.

Mmmmmm. Coooookies.

Remember how I said yesterday that I’ve been trying to train hard? Well, since I’ve recalibrated we’ve met with some success – there’s evidence that I’m training harder.

Gen could tell something was wrong with my hips by the way I got out of my chair. She didn’t say anything to me, she just eyeballed my gait.   I asked her to please check my left hip (and shoulder) but when I got on the table she went straight for the right hip. Screaming and writhing ensued. But the worst thing was that I knew if the right side felt like that, the left side definitely needed attention.

I’ve been wondering why my legs have been feeling funny. They feel tight and weird like they did in April/May when I started “running” for real. Now that Trainer D and Coach R know that Smurfette is watching me they are really putting me through my paces and I am trying to log more AlterG distance and speed. The end result is that my hips were a little bit in the subluxation zone. Not a full subluxation, just a beginning movement. But don’t worry, Gen put me to rights lickety split. (Hence the screaming and writhing. Later the Front Desk asked, That was you?)

And then she checked my forearms. They aren’t as bad as last week – the tendons aren’t as crossed, but she said it felt like I had kept on doing what I had been doing and she accused me of continuing to use the hair implement that did this to me. Now, I heart that thing and am having withdrawal, but that’s not enough to make me want to hurt my arm more. I haven’t used it. I even wore my hair super straight today as proof.

Another piece of evidence that I’m training harder is that Trainer D is now opining strongly on the kind of protein I need to be consuming after training since we’ve upped the intensity level. Sometimes he greets me with an “I’ve been thinking…” sort of hello, and I know I’m in for it. His newest scheme is to introduce me to circuit training on carefully selected machines.

Trainer D: There will be no resting in between sets except for how long it takes you to walk to the next machine. And if you can’t walk, I will carry you.

Me: I think we should skip straight to the carrying part.

325.  Make them carry you!

325. Make them carry you!

After training I sat in the café and sent this email:

To:      Coach R
From:  Me

…[Blah Blah Blah Administrative stuff.]

… I’m out of the house already (hanging with Animal Muppet – we had words at the assisted chin up machine and now he’s making me drink the most expensive and caloric smoothie ever.)…

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To be more accurate, we did not have words at the assisted chin up machine, we had words at every machine. Fun times were had by all.  Also, the smoothie wasn’t that caloric.  I have just been trained by Baker Smurf (who is diabetic) to be wary of all of the sugar in fruit.  And this smoothie tasted so yummy it was obviously fruit-heavy.

After we had words Trainer D informed me that my protein bar was not an acceptable post-training snack. I had to go downstairs to the café and get some liquid protein.

And then I went to see Coach R, “ran,” and ate a bar afterwards. So there.

But before that Trainer D found me in the café and I told him I did not like this whole “liquid protein” requirement bc I had developed a strong aversion to the powders he and Smurfette had introduced me to when I started being nauseous. Actually, it’s probably influenced by the fact that I drank so many of them pre-Oregon. This was his response:

Trainer D: I need you to put your big boy pants on and DRINK THE PROTEIN.

Me: Did you really just say that to me? Booooo.

Earlier I had told him upstairs in the middle of a set, You know, you should really leave bossing to the pros. But if you roll with me a little longer I could teach you some tricks. But apparently he’s absorbed enough via osmosis for him to offer opinions very freely and heatedly. So for now we’ve come to an agreement that I will slurp down another Ensure (Active, High Protein, Low Sugar) after I see him (and Coach R).

When Gen moved from my hips to my shoulders I felt like I was being smushed like a pancake. More screaming and writhing ensued, and I asked rhetorically,

“Gen, WHY is my life LIKE THIS?!?!?”

Her reply was definitive: “Because you’re getting it back.”

 

PS.  My arms really are acting up so I need to bow out early this week. See you later 🙂

Ann Ning Learning How |Nonprofit books on Amazon!

76. “You didn’t do anything wrong.”

Random pic:  Doesn’t Ezzie look sweet?

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Originally posted Dec 31, 2012

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I had some major timeline confusion when I woke up.  Okay, I had all sorts of confusion that was not limited to the timeline.  I asked if I had really gone to Africa, if I had met with my elders in MD (yes) to ask if I could be a missionary and if I had met with my elders in OR (no – the meeting was scheduled for Monday.  I got sick on the previous Thursday).  I confidently told Mommy I knew we were on a train that was circling the city – proud that I had figured out why I was feeling the way I did.  I told Ai Ai all sorts of things I shouldn’t have told her, and this was also the time I’d say anything to delay my parents’ departure for the night.

The problem was that even if I was making something up I believed what I was saying was the truth as soon as it left my mouth.  One night I told everyone I needed to talk to Tanpo.  I had to get them to ask Tanpo to come near to my bed so he could hear me.  So then I told him I was sorry that I didn’t call home to tell him/Mommy I got sick.  The incident I was apologizing for was purely fiction.  Of course there was no time to call anyone when I got sick – the ER doctor called home for me.  I don’t know why I said this happened, but I did, and when I made this statement it raised all sorts of red flags in my sister’s head.  She was visiting at that point and she didn’t let me continue talking.  Instead she used her “Mom voice” (“Look in my eyes! [Insert instruction to child]”) to tell me, “You didn’t do anything wrong.”

I think I believed her and I remember feeling relieved and I stopped crying.  Apparently I had a lot of angst about my situation even though I didn’t fully understand it, and the angst surfaced in storytelling etc.  I do understand my situation fully now, though, and I still have some angst.  (And I’m still telling stories – but this time they’re true.)  A couple of mornings ago I told Mommy I couldn’t shake the feeling that I did something wrong (and therefore I got sick).  She emphasized that I did NOT do anything wrong, but even if I had done something wrong (which she did not think I had) God had already forgiven me.

I thought that was a very good reassurance because I could debate about the issue of wrongdoing until the cows come home, but God’s forgiveness is incontestable.  And when I stop thinking about myself for a moment (which isn’t very often), there are plenty of people out there who are living with the consequences of past choices either from decisions they made themselves or choices their loved ones made that impacted their lives forever.  There are also so many people who have to deal with things like causing or being involved in a car accident or a fire – things that happened unintentionally but that carry the weight of responsibility anyway.  Whatever the reason (real guilt or imagined), I am so thankful that forgiveness is a fact and it’s readily available.

I John 2.1 …And if anyone sins, we have an Advocate with the Father, Jesus Christ the righteous.

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429. I Don’t Want Your Pity.

A few months ago a friend who was new to RecoveryLand verbalized a problem I instinctively felt at the beginning, but never gave voice to. When everything is different about your physical situation and as you adjust to being noticed in passing and actively observed you start feeling the fleeting glances and intent stares even if (a) you don’t have the visual skills to actually see them or (b) you’re just imagining people are looking bc you feel so terribly conspicuous and your insides cry out, I don’t want your pity!

Even after 3 years I still struggled with this idea. When I told Gen about my “interview” at The Gym when I said, You ready to let all this loose up in your facility? She laughed, called me crazy (takes one to know one) and said, You really go for shock value, don’t you?

298.  Somebody - PLEASE just tell me what to do.

298. Somebody – PLEASE just tell me what to do.

Not even, I replied. Seriously, I was trying to give them a chance to tell me to go home and sit down quietly for my own safety. I told Coach R, That’s why I entered [the Running Gym] so cautiously. Experience has taught me to be prepared for people to be like, Quick!! Bring the waiver!!!

So I’ve practiced hard on signaling to the market prior to entering the Post-Rehab world. But around the time we went to Oregon I had that huge realization that I didn’t want my Game Face to become my Permanent Face. Remember that time I saw the ceiling at The Gym and freaked out? It took me a couple of days to eventually tell Mommy about it, and a couple of weeks later it happened again and I told Trainer D. I decided I wanted to practice talking about sad stuff bc it is what it is – it’s a part of me, and by talking about it I get to control how the memory exists in my own mind and how to represent it to other people.

348.  What's This Going to Look Like?

348. What’s This Going to Look Like?

My philosophy now is that although I don’t want your pity, it’s inevitable that sometimes people will in fact, feel sorry for me. This usually manifests itself in acts of courtesy many people usually don’t take time for. I decided I’m cool with that. Although I will do my utmost not to invite pity, it’s my job to honor the kindness motivating you to run and open the door for me, or to give me your seat.

401.  This is how Tans go on vacation

401. This is how Tans go on vacation

There are some exceptions to the not inviting pity thing, e.g. when I’m so far gone I don’t care – I want you to feel sorry for me, and PS. Would you please carry me around, or choose someone on your staff to do so (you seem to have a superabundance of interns). But most of the time, when I’m feeling pretty well and thinking, hey, I’m lookin’ pretty good today (mobility-wise), and then the guy cleaning the floor leaves his mop to come hold my hand so I don’t slip (true story – ask Hannah and Boo Boo), I am really thankful that I still have the mental capacity to recognize that situation for what it is: Compassion.

9.  Can I hold your hand?  (What's your name?) | Hannah: "What's 'considerate' lie?"

9. Can I hold your hand? (What’s your name?) | Hannah: “What’s ‘considerate’ like?”

 

Ann Ning Learning How |Nonprofit books on Amazon!

354. How and Why to use an AlterG Anti-Gravity Treadmill

Using an AlterG | Ann Ning Learning How

I’ll refer to an AG Treadmill simply as an “AlterG” bc in my mind it’s like how “Band-Aid” is considered synonymous for an adhesive bandage. The only other kind of AGT I’ve used is a ZeroG (the giant Baby Bjorn) at Planet Rehab. I don’t know of any other ZeroG’s anywhere else so for convenience I’ll talk about the AlterG. I’m not affiliated with this company – I’m just providing information I wish I’d known before I started.

I have spent 2.5 years perfecting my outpatient persona – e.g. to accept the Therapist assigned to me, learn whatever I can, and make his/her day go by fast. I’ve tried not to be picky. It’s been easy bc I have consistently been given real winners. I made a genuine effort not to harbor unreasonable expectations (esp. after M37) but one of the marks of God’s care for me throughout this process is that everyone keeps on being a highly proficient practitioner. So now as I near the end of my outpatient career I’ve gotten choosier.

I’ll get back to the AlterG in a minute – this is related, I promise. As I transitioned to Medicare via Kaiser I chatted with a Rehab Receptionist to set up my eval and told her I needed someone with an appropriate skill set. When I went to The Gym I indicated that my work ethic would be strong but I needed my trainer to know what (s)he’s doing. When I started talking about core strength during that initial “interview” Trainer D’s eyes almost fell out of his head in a retrospectively hilarious moment of resonance.

33.  *Are you using your core?!?!?*

33. *Are you using your core?!?!?*

This is a central tenet of long-term Recovery: signal to the market. Let people know you’re in this to win it by having the forethought to indicate what you want, what you can do, and what you need. Making your intentions clear increases the likelihood of getting your goals met and (if an issue) gives the organization a chance to assess the risk-level they are taking on when you come in.

84.  I Come in Peace

84. I Come in Peace

I did this with Coach R. It paid off bc while I was expecting a simple transaction (time rental on the AlterG) I ended up signing an important ally for ORFR. I told him I was going to get picky simply because at this stage in the game I can and if I was going to get treatment it was going to be from him. When advising me on what to do, I think Coach R used the phrase, If you want to do this right… We’ll work on balance, strength, and spatial awareness so I won’t always have to depend on an AlterG. But while we’re working on it I am SO thankful to have the opportunity to use the equipment available to me. This is why and how you can, too:

Why to use an AlterG

  • Choose the body weight % you want to load (20%-100%)
  • Great for rehabilitation of injured athletes, or those who wish to keep training (e.g. pregnant marathoners) without high-impact workouts
  • Eliminates falling risk (!!)
  • 59.  I'm not doing that.

    59. I’m not doing that.

    There are harnesses you can put over a treadmill making it impossible to fall out, but most do not have anti-gravity/unweighting capabilities. Even if it does M37 explained that a harness allows the practitioner to move your legs for you if you need it, but the AlterG requires a higher level of mobility bc your legs are sealed in the bubble – training is eyes-only. People usually peer through the large “windows” around the bubble and offer feedback. Some machines come with cameras and a screen in front so you can watch your feet. I used to watch mine all the time at The Southern Gym (the PT practice where I used the AlterG last summer) bc my left leg strays beyond the confines of the belt when tired. I must rein it in intentionally.

How to use an AlterG

  • Find one: Go to AlterG.com. On the top right and side-bar there are zip code fields that yield a list of local AlterG’s. (I think this is a U.S.-based service presently – sorry, international friends!)
  • Weed through the list: Many of the places will be clinics requiring you to be a patient with an Rx – the machine is not for public usage. Some boutique gyms or running stores have an AlterG. Sports teams might have one, too, but this is not helpful for most. I prefer PT practices that rent time on the AlterG. If you can’t tell from their website, give them a call: 1. Confirm that they have an AlterG on site. 2. If yes, do they rent AlterG time to the public?
  • Make your initial appointment and think of the package you’re interested in – e.g. # of minutes per week. Some places give you an initial training on how to use the machine (this could be an extra fee). Others have their own people always on hand to help you in.
  • Be prepared to wear funny shorts. Some places ask you to purchase your own if you’re going to be a regular user (around $75) and others keep an assortment of sizes on hand for your use. They are like neoprene bike shorts with a narrow rubber tutu around the waist that you slip over whatever you’re wearing. The tutu has a zipper around the edge. When you step into the deflated AlterG you’ll step into the circular hole in the middle. They’ll pull the frame up to your waist (Coach R prefers it to sit slightly lower to allow for greater freedom of movement in the arms). It locks into place and then you/they connect the zipper on your shorts to the one on the AlterG. Now you’re zipped in to the bubble.
  • Turn the machine on, or your practitioner will do it and advise you on arm placement to promote an accurate weigh-bearing calculation by the device as the bubble inflates. Choose your % load, speed, and enjoy your walk/run!

PS. The title picture is me at The Southern Gym with my niece Hannah. Ai Ai was reluctant to let me walk the 50 feet inside the building to the Southern Gym but occasionally allowed H to accompany me – but she had to hold my hand. I haven’t held Hannah’s hand since she was 3-4 and we’d zip around town and have fun in general. I had no idea my sister took this picture. I was too busy looking at my feet on screen.

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330. WHERE do I find these people?!?!?

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I like to tell M(37) and Trainer D/Mr. Miyagi about each other since I think they will be entertained by our shenanigans (the things they make me do).  BTW it is one of the great and unexpected joys of my life that I still get to see M (37) even though she’s no longer my PT.  The fact that she is a fixture in RecoveryLand ranks right up there with how I get to “talk” to M, my friend from RIO.  Fun Times, people, Fun Times.

59.  I'm not doing that.

59. I’m not doing that.

Anyway, I recently asked M(37) if she remembered the post, “I’m not doing that” and if she recalled saying that I tell her a lot of jokes.  Answer:  no, she did not remember saying any such thing.  So I gave her an illustration.

Example:  “I want to lie down.”

That’s not funny. 

That’s just true.

I told Trainer D that one.  He quite liked it.  I’ve had occasion to use similar lines on both of them.  E.g. one day I was doing squats or something in the parallel bars, and I called to M, who was sitting on a stool on the far end,

Hey, M – remember that time you said you were going to be nice to me?  [Subtext: Did you forget?]

PS she really did say she was going to be nice to me that day – I think I told her I wasn’t feeling well.  Her sympathy waned as the session progressed.

Trainer D has openly admitted  [warned me] that his accuracy at counting reps probably isn’t the most reliable.  Mm hmm.  You’re telling this to the girl with the brain injury who can’t keep track anyway.  Great.  I told him about how A (6)’s seconds were longer than human seconds (when he wasn’t looking at his watch and was telling me to do something and hold for X), so D often uses a stopwatch so we’re clear – but when counting reps all bets are off. I’m not the best counter at this point, and really, do I have to do everything around here?

One day I was hauling some kettlebells around and Trainer D said that this was going to be the last time I had to do this.  He also promised to find some bales of hay so I had something to look forward to.  :/

I dutifully started walking, heavily weighted, while he pointed to the space right in front of him and said encouragingly, Right here!  I was like, Ummm…I know – I’m trying.  I can see you and I’m aiming for the middle, promise.  Maybe if I didn’t have to carry all this it would be easier.

At the end of the line we turned around and kept on walking.

Hey, D, I called, Remember the time you said that this was my last set?

We both laughed and he took the kettlebells from me.  Mission accomplished.

Last week while I got to rest after the kettlebell gait training exercise I told him about my latest conversation with M (37).

Me: I always see lots of people lying down at PT…why is that never me?

M37:  We’re working on your endurance.  (Side note:  I am grateful to be able to build endurance but sometimes I’d rather just take a nap.)

Me:  But really, lots of people are lying down.

M37:  It could be for several reasons – e.g. they’re working their core on the mat.

Me: (pressing the issue) No, but really – I mean like with a heating pad.

M37:  Because they’re in pain.

Me:  I’m in pain.

M37:  Mm hmm.

When she just smiled and said, Mm hmm, I was like, Why do I even bother?  And Seriously?  Where do I find these people?!

And then I remembered – as soon as I was able to understand what was at stake I began asking God to send me the right people to help me.  It just so happens that the “right people” have all been fantastic, although I’ve been trying over the past several months not to have unreasonably high expectations…But they just keep on being good at what they do!  Before I was able to ask He just lined up a bunch of highly proficient practitioners for me to meet as I got acclimated to life in RecoveryLand.

You gotta be careful, M joked, you might get more than you ask for.  I am so thankful that I have.

322. Don’t Be Afraid

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A few weeks ago I went downtown with my friends to see the Nat’l Christmas Tree. It was the first time I have gone out with friends at night and since there was a lot of walking we brought Jack the Transport Chair. It worked out great because my friends know I’ve got a safe place to be, I get to rest, and they park my chair with the strollers so their children can entertain me during breaks. Wheelchair handling is not a skill any of my friends practice professionally, but they do what I do and learn on the fly. The results are often hilarious given our personalities.

Ed says, "Does this thing go any faster?..."

Ed says, “Does this thing go any faster?…”

Example: we were crossing a busy intersection and as we plowed through the crosswalk KAR (my driver) called to me over the din of traffic, “Don’t be afraid, Ning!”

I guess you have to know KAR – but many of you do – and imagine it in her voice, which makes it 10x funnier. It was also funny bc I was obviously not afraid. I was hanging on to Jack’s arm because I was laughing so hard and didn’t want to fall out, and I took a few pics on my phone while we were in motion.

But KAR’s admonition made me recall a more serious time. I was only 5 years old and my brother Ernie was 13. He was going to have his 2nd heart surgery (he had his first when he was 5 or 6, PS he’s very fit now – good thing, bc his children require high-energy interaction), and was older and able to absorb and be concerned about the risks of the procedure, blood transfusions, etc. I have no idea how he and my parents handled it. I’ve actually never discussed it with Boo Boo – I wonder if she fully understood what was going on. Anyway, I was only 5 but Tanpo’s parting words to Ernie as the team wheeled him down the hall are seared in my memory. Ernie went straight from his room to the OR and after his bed passed through the doorway and he was rolling away my dad stepped into the hall, cupped his hands around his mouth and shouted, “Don’t be afraid, Ernie!”

I think Dad also quoted a verse from a Psalm we had just read but I don’t remember that part. All I recall is that what Daddy wanted Ernie to remember was to not be afraid. (Sniff.)

I haven’t been feeling great lately. I’ve had more pain, I’ve wanted to sleep a lot, and I’ve lost my appetite. That’s why I haven’t posted any recipes in a while – I don’t want to eat and I haven’t been able to stand up to cook. I’m feeling better today, though! CMD poked me in the back yesterday and gave me some new herbs. So I think this is the upswing.

Last week I was in the kitchen and Mommy was talking to me about why I wasn’t feeling well. “Are you anxious about something?” she asked.

I was playing with the food on my plate but when she asked this I burst into tears. (There was no prologue – just WAH!!!)

Remember how I said in yesterday’s post that I’m “strangely more relaxed?” Well, that’s probably about 80-90% of the time. I’ve had plenty of time to think about this and I know that control doesn’t lie with me, so the pressure’s off. But I’m wired to like it when I can control things so this exercise (of Recovery) really goes against the grain. I’m not interested in the suppression of my feelings – yes, suppression can allow me to be functional, but it won’t be sustainable in the long run – I’m going for complete transformation so I don’t have to worry about them anymore.

310.  Mucho Trabajo

310. Mucho Trabajo

Apparently the execution phase of my plan is not rock-solid as yet. It’s like when I mentioned how I want this to be “effortlessCaution: This is a work zone. Psychosomatic symptoms have likely been building up for several weeks now. As my books have finally been published etc. I’ve been glad bc this is what I’ve been aiming for but this event also signifies that this thing really happened to me – my old life is gone and so are what were my future prospects.

I mean, yes – I know this happened – I’ve been sure about it since summer 2011, but acceptance and the understanding of long-term impact is a work-in-progress. Traveling and the development of new wrinkles in my physical condition have also put me more off-balance than usual. But I know what to do about this – renewed enthusiasm for the Listener’s QT and Prayer Detox is already providing immediate relief. Like the lady in Proverbs 31, I want to smile at the future.

268.  Prayer Detox for Beginners

268. Prayer Detox for Beginners

143.  The Listener's QT

143. The Listener’s QT

Proverbs 31.25 “Strength and dignity are her clothing, And she smiles at the future.” (NASB)

2 Timothy 1.7 “For God hath not given us a spirit of fear, but of power, love, and of a sound mind.” (KJV)

320. Why she not friendly?

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A long time ago I used to zip around town with Hannah (the only grandchild then) in the back seat of my car and we’d go to the park, the library, the mall etc. One day at Tysons we had the “What’s considerate like?” conversation. Another time we were at the library – I insisted on taking all my children there whether they wanted to go or not because I love books. We were in the play area with the fish tank and rocking chair when Hannah approached another little girl who was playing nearby. When Hannah’s greeting went without a response she, confused, looked at me and asked, “Why she not friendly?”
Poor Hannah. She was just trying to be personable and she was too little to understand that while she was unquestionably secure since Aunty Ning Ning was nearby, the other little girl’s mom was around the corner, so the child was understandably playing it safe by not talking to strangers.
But her question illustrates the tension between two concepts we teach our kids: A) friendliness and B) wariness of strangers. I don’t know enough about this (I should’ve read The Berenstain Bears Don’t Talk to Strangers more carefully) but I think one thing people teach their kids is to know how to identify people who are “safe” to ask for help in public if the occasion requires it.
When I was little we were taught to look for a policeman in uniform if we got lost somewhere. In the absence of an officer I think kids were also instructed to look for a mom with children in tow since she’d know what to do.
But the perils of “stranger danger” were not on Hannah’s mind that day. She just felt the confusion of having her friendliness unmet.
One of the hardest things for me to learn has been to be friendly without any need for a reciprocal response. Many times in This Disabled Life I have discovered that reciprocity will not be forthcoming so it’s best (emotionally safest) not to expect it in the first place. I do, however, have a new understanding of the value of unsolicited encouragement and unexpected kindness, and I enjoy giving these out when I can since I have received many gifts of this nature and know how they can turn a frown upside down. I also understand that although I’m moving “at the speed of life” this might be SO much slower than your speed of life and you might simply not have time to reciprocate. This is one of the painfully obvious outcomes of learning to live with an injury like mine.
The idea of reciprocity is very human. There is give and take – it appeals to our sense of justice. But my internal rules for everything have been upended and here I am trying to love without the expectation of return. But if I’m going to live this way it won’t be without reflection – every act of friendship on my part is an intentional attempt to love my neighbor as myself. My impaired social filter often disallows me from being generous, say, to other drivers, but I’m trying…more accurately I should try.
Don’t worry, I think it’s okay for me to not put myself in the path of people I know from experience whose idea of encouragement does not jive with my own. But I choose to honor the sentiment behind the delivery that, to my admittedly picky sensibility, was flawed.
The point is that you don’t know what kind of response you’re going to get, if any, until you put yourself out there. I was proud of my niece for reaching out that day at the library and trying to make a new friend. I’m going to keep on doing the same, and since loving your neighbor as yourself is a God-endorsed guideline, I am sure I will not live like this at a loss.