PS. This is the same child…
PS. This is the same child…
Sometimes I think to myself, I know – I’ll wear that shirt. Or, That dish would be perfect. And then it hits me like a ton of bricks. I used to have that shirt, dish, book, gadget, life.
A while ago I gathered enough courage to open a little shoe box full of the “junk drawer” bits and pieces from my apartment. The shoe box was from my last Zappos order when I was well – when I ordered “Missionary Sandals.” The serviceability of red patent leather is debatable, but whatever. Moot point.
I opened the box long enough to fish out the picture frame (above) the movers must have taken from my countertop and put in the box for me. Then I closed the lid and didn’t want to look at any of that stuff anymore bc I was too sad.
I remember the day that photo arrived. Karine had chosen that frame especially for me. I displayed it proudly and taped pictures of a pasta acorn and other works of art from my children to the wall. Now I like to put her picture in front of me to cheer me up while I eat. It’s impossible not to smile back at that little round face that is so skinny now. Sigh. She was only 4 when I got sick. Now she’s 8. We went to the American Girl store to celebrate her 5th birthday soon after I came home. It was my first outing in my wheelchair. It was worth it to see Tanpo eating star and heart fruit kabobs with great solemnity.
Sometimes life is tough. I get it. I wrote in my Memoirs that I considered holding my breath until this was all over but I read once that if you tried that your body would knock itself out and start breathing again as a self-defense mechanism, so that wouldn’t work. I’ve considered the staying in bed with the covers over my head route but I spent enough time in bed as an inpatient (and an early outpatient) and trust me on this one – it gets boring. So if you know anyone who is bedridden from illness, think about how you could brighten his or her day. :)
Meanwhile, there are plenty of able-bodied people in the world who struggle to get out of bed in the morning simply bc the weight of life’s responsibilities is so crushing. I am truly thankful that I decided the Gospel is true bc that means I have unlimited power and joy resources at my disposal. I’m still working on accessing them effectively – c’mon, don’t you think it’s more fun to worry unnecessarily?
But I appreciate that scripture acknowledges that sometimes “the journey is too great for thee.” This is what happened to Elijah in I Kings 19. I used to lie in my car (seat reclined) at 6am in the parking garage in DC listening to this message by KRK. That was the time I was stressing myself out crazily, I ended up a little scrawny, and I stubbornly insisted that if I just woke up a little earlier I could get everything done. (Spoiler alert: I never finished it all.)
Elijah, after a great spiritual triumph, is gripped by fear when Jezebel goes on an intimidation campaign-killing spree and marks him as next. He actually lies down under a tree and prays for death. But you know what? God provides food for Elijah that fuels him for the next 40 days until he reaches Mount Horeb. In the same way, food is ready for us – but you still gotta get up and eat.
Arise and eat; because the journey is too great for thee. I Kings 19.7
A long time ago Ernie brought Karine and Ezra to visit us while Ruthie was away (this was before Peter was born). This was the time we ate ice cream and went to Whole Foods where I rode the escalator. Since then I’ve practiced a lot with Mommy, J, and Boo Boo. A couple weeks ago I had lunch with a two friends and their daughters. The little girl in the pic below wanted to ride the escalator while her mom and aunt were busy wrangling the baby, so I volunteered to go with her. We went up and down without incident except midway through I heard a whistling noise from above – Mommy had arrived just in time to see me joy riding alone. Technically, I was not alone – I was being supervised by a three year old. But she was too short for Mommy to see. Mmm hmm. My friends are so funny. They had refused to leave me unattended, but the moment I break loose Mommy shows up. :).
Anyway, Ezra was eating noodles or something for dinner and after he took one bite he was so pleased that it tasted so good he leaned over, kneeling on his chair, extended his right hand in the air and said in the classic Ezzie-voice, Hey, Daddy – High five!!
This summer, Josh took one bite of his popiah and immediately left his chair to do a victory lap around the kitchen.
Way to go, Mommy –Baker Smurf doesn’t just bake.
The picture up top is one of my favorites of Hannah and Tanpo. We went to eat dim sum and my baby big girl Hannah enjoys culinary adventures. She loves eating fun things with Tanpo. One time before I got sick they sat side by side at a favorite restaurant, giving each other congratulatory high-fives on eating an appalling amount of lobster – stir fried “Thai style.”
While we were on vacation together this summer we went to a huge Asian buffet and I just heard her sweet voice ringing out from behind the pile of everyone’s dishes and plates, I love you, Grampo!!
See? I told you Tans train their young to eat the Tan Family way.
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?
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.
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.
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.
Remember a while ago when I said I was “strong enough to keep on running even though my left leg was dragging pathetically on the belt”? “Strong” might not have been the best word. A couple of weeks after I wrote that post I decided I couldn’t ignore it anymore. This is what had happened (see the picture above – these were my Supple Leopard/World Cup shoes, but the left toe rubbed off entirely. This is hilariously symbolic. So ends my experiment with the minimalist style).
Apparently bits of my shoe are stuck in the AlterG. Sorry, Coach R – my bad!! It took me a long time to admit that my stamina and mobility had taken a real hit. PS. I’m still “running” but I have unweighted myself so I’m much lighter and for the first time in several months I’ve noticed Coach R assume the “observing stance” common to PTs and Trainers out of the corner of my eye. Based on his comments he’s been observing all along, but I think he’s maxxed out the perimeter he’s willing to give me and is closing back in.
The fact that it took me a couple weeks to notice the uneven wear on my toes is funny but unsurprising. I often lack the self-awareness to give feedback – my Trainers have to be clairvoyant. One day I did an exercise on the right then on the left and Coach R asked me which side was harder. Left…no, right… I dunno! I thought out loud.
I got a good laugh.
Coach R: That’s the best answer ever.
Me: Seriously – how am I supposed to know?
I wasn’t trying to be funny – was that a trick question or something?
But when I showed my peeps how my pretty Supple Leopard shoes had gotten torn up they were ALL OVER the situation. Gen put her ortho hat on, made me feel better, and gave me some exercises to do. Coach R immediately instituted ankle strengthening moves we do all the time. CMD painted the herbs on really thick and has kicked the magic into high gear for the past couple months. Trainer D took a closer look at my ankle area while I was lying on a table and I saw him knit his brows and shake his head.
I asked him during the next session what that had been about.
Trainer D: You saw that?
Me: Of COURSE I saw that. I have two eyes. I’m not saying they work super well or anything, but yeah, I saw that.
So he told me that something was wrong with the muscles in my leg and ankle (surprise, surprise) and I asked what the consequences were if he just left me alone. I knew from experience that the remedy would probably hurt. Given the consequences I decided to ask him to go ahead and take care of it. It hurt like I expected but he knew I was nervous, which helped, and by then I was used to Gen’s superhuman strength and unwavering determination to put my muscles in their right places, so it wasn’t as bad as I had anticipated.
I’ve examined the set of sneakers I purchased in March/April and all of them have uneven wear on the toes. The Leopard ones are the worst since they have the thinnest soles. I wore them for a couple months for my leisurely (no treadmill) inside-the-house-exercises at Ai Ai and Tim’s and then I wore them for two months here at home. They were part of my regular rotation so yeah – it was two months of occasional wear. Two. Months.
So I’ve resigned myself to spending more money on sneakers now that I’m on my feet more and my gait is impaired so the wear is uncool. It’s October now, and the set I purchased in August is holding up okay. I was hoping to make it to October, and here we are! So now I’ve got my sights set on EOY 2014. Maybe it’s helping that I’m consistently “running” super light, and everyone is helping my ankle feel better. However, even though it’s no longer sprained apparently my Achilles and/or my posterior tibialis are messed up.
When Coach R was explaining it to me it was one of those times when I was like, Seriously, R, it’s like you’re not even speaking English right now. He then offered to “work” on it, and I said, define “work,” and when I understood his meaning I apologized beforehand for anything I might say in the ensuing 10 minutes. I survived, CMD covered everything with herbs after poking and shocking me, and charged me solemnly not to shower until tomorrow.
So for now I’m going easier on my home exercises, concentrating on my balance and coordination, elevating the left foot whenever possible, and trying not to make things any worse. As it stands I’ve got plenty of supervision, and overall I’m glad to experience hiccups like these as opposed to the more serious setbacks that litter the road in RecoveryLand. Trainer D calls stuff like this “well-people problems.” For me, the fact that I’m well enough to have issues like this is a-okay. My shoe-wear problem stems from the fact that I had a stroke that impacted my left side more than my right, but it also indicates that I’m using my legs enough for it to show. I read LH to… Hope for the first time in a while and remembered that in March 2013 my back was acting up so badly I had to take time off, go lie on the Ceragem bed just to make it past 6pm and took painkillers before going to Planet Rehab even though they made me sleepy. M37 let me lie down once during that period bc she felt SO sorry for me. I had tried to grasp a stair railing during a rest break and completely missed. She then let me lie on a mat for 10 minutes before sending me to The Pool. But now my muscles are so much stronger, plus I know how to manage them and my energy better. Yay!
Hey, Mommy, look – I have well-people problems!!
My first week of Freedom is over. When big transitions have come into my life in the past I experienced a nervous sort of excitement. This time I’ve had a year to prepare and have built a routine of expert-supervised exertion. The great news is that I’m not nervous, I’m comfortable.
When I left my job and went back to school I woke up on the first day I didn’t have to go to work and savored the thrill of getting to spend the day however I chose. I was similarly exhilarated when I moved to Oregon. I slept on the floor of my empty apartment (the moving truck hadn’t arrived there), cooked everything in one pot I bought from Target, and ate it off of my lone plate with my solitary fork. It was a fresh start – I had not anticipated that I would get such an opportunity, but I did. Yes, I cried for about three months straight as I adjusted to life away from my family, but in the end I loved it.
A friend told me recently, There’s an open door in front of you. Don’t be afraid to step through it.
I just saw Gen this morning. My ankle has been bothering me – apparently my Achilles is compromised. Gen felt what Trainer D identified visually on Monday while supervising me on the treadmill. We’ll see what Coach R and CMD have to say. That bump on my left knee has started to hurt, so that’s not great either. But I’m going to try the stretching exercises she gave me and we’ll re evaluate in a week since she’s not a fan of my desire to wrap it up with a brace as this might cause the quad to lock up even more, and it’s already very tight.
Yep, it’s another great day in RecoveryLand! I like to tell Coach R that when I almost fall over, have a brain misfiring moment, or just need a few more seconds to lie on the table. But actually, I’m not being facetious right now. Yes, my leg is being uncooperative but after I saw Gen I got to go to the supermarket with Mommy and we are now home on this extremely rainy day and I get to have a nap prior to my Managing Me exercises. It’s the triumph of the mundane – so yeah, it really is another great day in RecoveryLand.
Although I’ve been having some physical wear and tear I’ve mentioned that it’s really important to me to keep on doing this. One of the reasons is my appetite. About a year ago I did my Vegan Experiment. I felt really good since I wasn’t overburdening my digestive system.
I have gradually eased up on the veganism but at first I couldn’t even eat too many raw foods or protein-rich plant foods like beans or tofu bc CMD could tell by my tongue that I wasn’t digesting properly. Then I prepared to go to Oregon and the eating thing really deteriorated. CMD gave me a Ziploc bag full of tree-like herbs meant to cure my nausea. Coach R left me alone on the AlterG to relax. Even Trainer D didn’t fuss with me about my diet when I told him I was stressed.
This summer I started incorporating some fish into my diet after ORFR really took off at Boo Boo’s house. A couple of weeks ago I took the plunge and started eating meat for real. Red meat. Bison, to be specific.
The result of having a Monday double-header (Trainer D and then Coach R) is that I am exhausted (I shower and then take a long nap) and famished (I eat lunch, too). I have not been hungry for a while. I have instinctively thought it might be good to eat some animal protein (I was hoping it would help with my fatigue), but my latest round of blood work indicated that yes, this would not just be “nice,” it was strongly recommended.
We didn’t talk about eating meat, actually – it’s just that I’m trying to take a more natural path before trying the iron supplements my PCP told me about. I’m also drinking an herbal mulberry-infused tea CMD gave me that’s supposed to help.
So far it’s going great – I’m still moderating the carnivorous activity but Mommy and Daddy are happy to see me eating some meat and Trainer D is a happy camper and no longer gets on my case re. my amino acid profile. The “running” thing definitely helps. Just like I can feel how it helps me use the air in my lungs more effectively I know it’s helping my body use fuel more appropriately.
Wow – I thought I messed up my metabolism that time I was a little scrawny in my early-mid twenties. That was nothing compared to the impact of the AVM Rupture and stroke. But anyway, I have enjoyed my first week of freedom sans Rehab. I was discharged last Wednesday and Mommy and I went to breakfast to celebrate. I had this:
Although I’m technically Rehab-free I am still heavily scheduled. This was intentional on my part. The next day I went to The Running Gym where I had a good “run” and Coach R was in fine form. Mommy and I then had lunch and I had a salad (I avoided salads for a long time bc they are raw) with steak on it:
Things are looking up.
It’s official – I got kicked out of Rehab last week. This is the first time I have truly been cut loose. Rehabilitation is the only thing I’ve known since I woke up in this situation. This is a big deal bc when I got transplanted to RecoveryLand my understanding was that As long as I’m in Therapy/Rehab I’ll be getting better. Well, I’m 3.5 years post-AVM and my formal Rehabilitation is over. That’s okay, though, bc I’ve spent the last year building the infrastructure for my long-term Recovery and recent bumps in the road have only made me more thankful that God brought me extremely skilled and caring people.
This did not deter me, however, from going to my appointment at The Gym directly after getting kicked out of Rehab and being mean to Trainer D. This was in violation of the fact that I had previously vowed to be nice to him bc I thought it was his birthday. Actually no, I didn’t say I’d be nice, I just said “I will not antagonize you…” but it turned out that I got the date wrong and now I have to not antagonize him for a lot longer than I originally thought. I did clarify, however, that accidents happen (Oooh, did I say that out loud? I hate it when that happens. My bad.), and that I have a brain injury. Also, let me remind you that I am not holding Trainer D responsible for this haphazardly. I know this is his doing bc of my retrospective sensitivity analysis. I used to do this for a living, people.
There was no sense of panic like when A6 discharged me from The Place. Back then I cried in private for the 2 months he prepped me for my exit, my blood pressure skyrocketed, and I practiced all this stuff I wasn’t supposed to do on my own hoping I could force me body to a higher level so I could continue PT.
Yeah, that didn’t go as planned. Dr. A6 Frankenstein kicked me out anyway on the understanding that I was supposed to go back for more when the time was right. Well, I’ve been a Physical Therapy patient at 3 other locations since then, and now I have 2 Gyms, too. When my PT discharged me she said, I think you knew….
Why do you think Ed is here? I affirmed. He was lying on the treatment table bc he had come for moral support. We had seen K our ST in the waiting room a few minutes before.
Hi, Ed! She greeted him. Do you have a procedure today, Ann? (She only sees Ed when I have a procedure, e.g. when I have to go to the ENT.)
No, I said, Ed’s here bc we have a bad feeling about this. We’re probably getting kicked out today.
I was actually very encouraged bc my PT said that the change in me was 180 degrees since we met a year ago. I look and move differently – she even thinks my vision is better, too. Really? How? I asked. Well, you’re not running into things anymore. :)
She did, however, express some concern that I might be a little too intense (my word – her phrase was funnier) about Recovery. I was like, Oh no, see – I was totally like this BEFORE I got sick, too!
Doesn’t that make sense? I asked Coach R the next day. He agreed.
Counting has not been one of my strengths since my injury. I used to count out loud before transferring out of my wheelchair so Mommy would know when to brace. One day after I fell into bed (Hannah used to say, tiiiiimber!) Mommy said we should work on my counting.
I don’t count out loud anymore but now instead of counting time for transfers I count other things like reps, steps, and the number of floors if I’m trying to find my way in a building. It doesn’t help when other people miscount or intentionally mislead me. Examples:
Me to Trainer D: You’re doin’ real good on the counting thing today. [Grin] I like to give positive feedback when I can.
[2 minutes pass]
Me: I take it back. You’re doing bad. That was NOT 26. That was 31. I just did an extra to humor you.
Me: How many squats?
Coach R: 100
Me [holding the medicine ball nervously and looking wide-eyed at our reflection in the mirror]: Like, all at once?
Coach R: Just kidding.
Me: You can’t do that sort of thing to me. I have a brain injury. You KNOW I was going to start the set.
Coach R (unrepentantly): I know.
In the elevator on my way to see CMD
Me to the UPS guy: What floor?
UPS guy: 3
Me [peering confusedly at the buttons to make sure I was seeing straight]: But there are only 2 floors.
UPS guy: Hahahaahahaha!!
It was very good-natured mirth and I had to laugh with him. I like cheerful people and he was making his day on the job more fun, and brightening mine, too. It’s like what I tell my people – I’m here to make your world a happier place.
I’m in a position to do that since I’ve gotten pretty adept (out of necessity) at counting my blessings.
The bottom line, though, if someone asks me why in the world I should be cheering anyone else up is simple: I’m a daughter of The King.
I was truly exhausted this weekend. I had a nice “run” and saw Coach R on Thursday but didn’t have my usual appointment at The Gym on Friday so Mommy said, You can’t even blame D. Internally I paused and was like, Well….you’d be surprised how creative I can get, but I searched my mind and came up empty handed even though I was still sore from Monday’s workout.
On Mondays I have a double-header. It just occurred to me that this is a sure sign of true progress. I used to be thrilled to have the stamina to have land PT at Planet Rehab then go straight to Pool Therapy, or vice versa. I used to go to the pool and tell them, Thank you for saving me from M37!!! The hot water (Therapy pools are kept much warmer than regular pools) felt great, and the freedom of movement was wonderful.
Nowadays I have even more challenging back-to-back appointments. I never used to look at my schedule when I was an inpatient bc of the visual issues, but also bc I dreaded seeing multiple sessions of PT on there. There was a lot to learn before I went home but I was just so terribly tired. I was convinced I’d die at any moment, but I went along with it anyway like, Okay, fine – we’ll play your little game. :).
I tried to schedule Gen on Mondays prior to the Running Gym, but had to change my routine to seeing Trainer D and then “running” right after. I don’t see Trainer D every Monday, but when I do, I always “run” directly after so his preference is to not do Leg Day. When I reminded him of this last week his response was immediate and enthusiastic – Woo hoo! Upper body day!!
Midway into our session I looked over and said plaintively, You’re punishing me, aren’t you?
Yeah, so I’ve been super sore. Hopefully the soreness will dissipate as my body adapts to the rigors of these new movements. That’s how it worked with the lower extremities, so I have high hopes.
Poor Trainer D has fallen off the Gen bandwagon lately bc life has gotten in the way. I know she has been really helpful to him, just like how she’s helpful to me. Side note: She says my ankle is better and I don’t have to wear the brace anymore! So I have been emphasizing a friend’s favorite phrase to D lately: Be kind to yourself.
She used to use this line on me before I got sick bc my predilection for overwork has always been obvious. But one day I got a cryptic comment on my blog from an “Anonymous” reader: Are you being kind to yourself? I sense backsliding…..
Bahahaha! I was like, I know that voice.
So I’m trying to balance this idea of being kind to yourself with my resolution of intentionally pushing the envelope. Sadly, I think I got so tired last week simply bc I had too much fun. I saw friends and we had a great time, but maybe I should try to be more self aware in terms of how I’m feeling physically, although it’s such an emotional boost to spend time with the people I love.
The moral of the story is that although I just got done saying that I’m going to continue “pushing it,” and although I feel the pressure of what are the consequences if I don’t do XYZ, I know there is enough time for me to do what God wants me to do. This includes resting. My theory is that I will function better overall if this happens. You should try it, too and we’ll compare notes! Have a great week :) !.