361. Priorities

The leg press at Ai Ai’s gym.

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

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

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

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

328. Operation Clean

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

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

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

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

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

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

223. I Found Grace in the Valley

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

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

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

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

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

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

 

 

 

 

 

359. Running with Myself

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

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

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

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

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

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

Good answer, Coach R!

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

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

229. Flourless “Nutella” Bars

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

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

245. I’m Rooting for You

 

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

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

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

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

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

113. Going Backwards (Why I like Ps 34)

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

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

284. Outlier 2.0

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

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

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

358. “I don’t need any of this.”

On the morning the moving truck was coming to my parents’ house in MD to move my things to Oregon in 2009 Mommy was so upset bc she couldn’t find the set of silverware she wanted to give me. So she consoled herself by going to the store that morning with Tanpo and purchasing a nice set of Oneida for me to use in my apartment. Thanks, Mom!

54. I like tea and the ladies like ME!

When I wanted to go to Africa Mommy and I had an ongoing conversation re. Do we pack the teacups, or leave the teacups?

 Answer: I’m not going to Africa. We left the teacups.

Actually, we left almost everything, not just the teacups, in Oregon. I dreaded seeing my things again. Since I left so suddenly I did not have to think about Oregon or what I left behind for the most part. But it’s the little things – like the coffee mugs I used every morning, and my beautiful Spode serving dishes – that break my heart because they represent the routine I will always miss and the lifestyle that is not mine right now.

Thankfully, the job of clearing out my storage garage was made easy for me. A missionary family recently returned to Oregon was able to use many of the larger items, and my church carried away the rest for their annual “garage sale” that benefits their camp. This was a win-win situation for me. I couldn’t have asked for an easier way to dispose of my things or worthier destinations.

Happily, most things were wrapped in paper by the packers when they emptied my old apartment in June 2011. So I was able to dismiss entire boxes labeled “fragile” – I didn’t want to see those things anyway.   I could have insisted that we bring everything home to MD – but there was no reason. If my teacups came home it would be to take up space in my parents’ basement until I was ready to move into my own place again. Since there is no timeline for that kind of life-change I figured it was better to just leave everything.

I wept over the mountain of shoes that fell out of the bottom of a wardrobe box. All my pretty shoes were dried and cracked from three years in a non climate-controlled environment. And as I struggled to reach into another wardrobe box (a tall one – so you can only reach midway in) to grab a couple of my favorite pillowcases my face crumpled up with frustration and sadness.

71. Learn Something!

Mommy came over to help me and I managed to grab one pillowcase. These were a set of two that I bought in Singapore many moons ago – a fine cotton tinted a delicate pink with white embroidery on the edges. But as I held the one I had managed to snag and remembered that I owned such an item and how much I enjoyed things like making up a bed with fresh linens I realized that my pillowcase was no longer pink. It had been stained and faded over time. I tossed it back into the box and told Mommy resolutely, I don’t need any of this.

Corrie Ten Boom knew it was only a matter of time before she would be caught and imprisoned for hiding Jews in her home and her role in the Dutch Resistance during WWII. Her whole family understood the consequences if they were caught but continued to open their home to people who needed a safe place anyway.

One of Corrie’s sisters (who was married and had her own family) had already spent some time in prison and based on her experience Corrie packed a tiny suitcase to bring with her when the SS showed up at the Beje (the house she shared with her father and sister) to haul them away.

In went a Bible, some clothes, vitamins and pills for Betsy (her frail sister), and as many other things as the small bag would hold. Corrie thought of it as her talisman against the horrors of prison.

On the night she was arrested, however, the prison bag was resting against the panel of the “secret room” in which 6 people had rapidly packed themselves when the SS raided the Beje. Corrie, bleary-eyed and suffering from the flu, rallied her wits and answered the rough guard’s questions. When he told her to go downstairs to be questioned with her father and sister she reached for her prison bag – but oh no! it was leaning against the part of the room she most wanted to conceal from notice.

“It was the hardest thing I had ever done to turn and walk out of that room, leaving the bag behind,” she says in retrospect (The Hiding Place, ch. 9). I have always been horrified by the moment when Corrie must abandon her bag. She had done what she could to prepare for prison life by packing that bag, but had to sacrifice it at the last moment. The rest of the book, however, chronicles God’s miraculous provision in the bleakest of circumstances – where personal items were contraband, and prisoners were unable to conceal anything especially bc of the degrading physical inspections – but He orchestrates the details to bypass these concerns. In the end, the Lord provides everything she needs not only to survive, but to thrive.

 

356. I decided

Ed on his birthday, April 7, 2014 – packing as we leave Oregon again

 

Hi, everyone! I missed you :). I made reference to returning to OR leading up to my hiatus but I never said outright that we were going there in early April. This blog is a record of my life – e.g. you can trace the evolution of my diet, and you can watch my thought processes unfold in real time…but not necessarily verbatim. Like when I started seriously considering visiting my hospitals when I went back to Oregon my insides revolted completely. I actually said out loud to God, I can’t and I won’t.

308. No Sign of Weakness

Unsurprisingly, the Lord changed my heart. In the following months I decided that I can, and now I can say I did. My theory that there would be enough grace in the moment when I needed it was correct. My job was to keep breathing. MommyDaddy did the heavy lifting. I think I tired them out.

Because old habits die hard I made a “book” with bright daily cover sheets and back-up materials of all the driving directions, details etc. we needed in the pages behind them. I used to be a highly proficient administrative assistant and could wrangle large groups of rowdy people/details in my Old Life but now I have trouble differentiating bw Saturday and Sunday so having me manage a calendar necessitates some flexibility on the end user’s part. Thanks for rolling with the punches, Mom and Dad!

We got off the plane at PDX and drove straight to Vibra (2nd Hospital) and saw M (“Anne” in Learning How…vol 1.) around midnight since she’s a night nurse. It was a great way to start the trip. She’s just as wonderful as I remember, although my perspective (no longer hazy, often standing instead of in bed or seated) is completely different.

348. What’s This Going to Look Like?

Due to the longer flight and over overusage I developed some bright red spots on my lower legs that were painful and swollen but settled down quickly after I rested. Don’t worry – I kept Mommy informed and prepared to go to to the doctor but it wasn’t necessary.

I wasn’t surprised at the spots, bc I got some bruising on my quads and left hip (without hitting anything) when I started pursuing ORFR more aggressively in Feb/March. I told Mommy, my doctors, and my Trainers. Tanpo does not know about the bruising, I wrote to Coach R, bc he is on a need to know basis and at this point this information is immaterial.

I never informed Tanpo bc the bruises healed rapidly and 5+ other people were watching me and I didn’t want to cause him undue stress. We already routinely have conversations about why XYZ is no reason for him to take me to the doctor/ER immediately – I didn’t want to invite another one. I have since informed him in writing, though, as part of some paperwork we worked on together. Not sure if he read that part, but I’m assuming he knows. Also, let me remind you that he keeps me on a need to know basis, too– e.g. ever since I locked him out of our online banking accounts he’s not telling me the password. I’m like the giant wheel of cheddar in the Cheez It commercials and Tanpo is the white-coated doctor who checks off the “Not Ready” box on his clipboard.

Anyway, when I told my new PCP she was like, Okay – nothing strenuous for 2 weeks, and come see me if they don’t improve. When I emailed Coach R he immediately ran off to consult a physician next door and I told him, I think she (my PCP) was largely just kidding about the “nothing strenuous” thing…and nobody’s gonna die from some bruising, least of all ME!!

Trainer D’s response was, Oh, no, see – we HAVE been taking it easy!
Heh heh. Should’ve seen that one coming. But really, he was careful etc.

Coach R emailed me back and said kindly, Okay, but we’re still going to do what the doctor says!

The best part of our exchange was that I didn’t realize it but I was acting exactly how I predicted I might act if something like this cropped up. When I recruited Coach R to join Team Tanimal I told him that …when I get discharged [from Rehab] I tend to try and do whatever I want. Happily, Coach R understood what I need him to do (rein me in) and fulfilled his responsibility creditably.

He let me “run” on the AlterG (I used a lesser % load) but declined to give me any other exercises after that. I don’t think we should do anything against what your doctor’s telling you, he explained.

That’s bc you’re a good man, Charlie Brown, I sniffed.

But seriously, this is exactly why I asked Coach R to help me out. I agree with his theory that we’re waking up muscles I haven’t used in a while. After 2 weeks of “ease,” though, I was so not sore it was troubling. I told Mommy, I haven’t been this not sore since I met Trainer D.

As I prepared to go to OR I needed to pull it together so I could do the necessary planning. On my last day at The Running Gym I told Coach R my new theory:

I decided: Ain’t no one gonna die. I mean, if I didn’t die THEN, I’m not going to die now.

I really meant that God didn’t bring me this far for nothing.

There is a lot to be said about our trip but I can’t yet. It was pretty rugged – I would have spent more time there with a less-frantic schedule, but we took the flights that were available. I really didn’t know how my brain and I were going to manage but it turns out I ran on adrenaline most of the time, overslept when I couldn’t take it anymore, and told myself, “I can rest next week.” That said, it wasn’t the hardest thing I’ve ever done. The hardest thing I’ve ever done was to wake up, find myself in this situation, and live through those first few weeks/months scared, confused, and so tired. But now I’m 3 years post injury  and I finally went back and saw the people who helped me live, and many friends who make it worthwhile. It was sad, but I’m glad I went.