Testing!!!

Hey, Matt @hopeforhankey – I wasn’t mouthy during my tests! Okay, maybe I was a LITTLE. But at the slightest indication of hesitance, they stopped traffic until I asked them specifically to proceed. THANK YOU, medical people – this is exactly what should happen. I appreciate it. I’ve been testing since April. That’s why I’m so tired. I’ve gotten cleared by MANY doctors, and I saved the best for last: my lovely Neurologist. Yesterday, I had my first MRI fully deaf in the L and HoH in the R. This is important bc a brain MRI necessitates immobilization of the head so you can’t see them approach you with the needle. I have VERY difficult veins, which makes it a huge production. Hearing loss + PTSD means I need to communicate my needs clearly. And all the techs were great. I also got an EEG. Quote – Me: Oh! I forgot to say I have a hole in my skull [pointing]. Do any electrodes go there? Tech: No….why? Me: Ummm…..bc I don’t like people touching the hole in my head? Tech [patiently]:No, I mean, why is there a hole in the first place? Me: BAHAHAHAHA. Sorry. 🤣 #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

All Smiles

Tan Family Funfest ‘21 🔥🙌💗

We had the joy of gathering as a family for the first time in a L O N G time, and let me tell you, I *needed* to see my siblings snd my children (who are so grown up now). It hasn’t been smooth sailing for me health wise this summer, but when I look at this picture and remember where the Tan family has been in the past few years, I’m ALL SMILES 💗💗💗 #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

Update 🙏

(1) S’s hip replacement surgery went well, and she was able to go home last night. She has home PT today. Please pray for continued healing and gains in mobility and Quality of Life

(2) DB still needs our prayers for comfort, courage, and HEALING! He’s on a vent, so he’s just gotta lie there and let his lungs heal. Please pray for improvement so he can get rid of the ventilator ASAP.

(3)Me: Got my test results and will begin night time treatment after insurance/equipment align. However, this diagnosis does not address all my symptoms. But the diagnosis was definitive based on the data and it’s a great starting point! Please pray for fast insurance/equipment approval, a successful trial, wisdom as I continue to monitor myself, and ultimately, a solution. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

Repost 268. Prayer Detox for Beginners

Originally posted in 2013. Is this what you were looking for, K? HUGS. Say hi to P for me.

I was at the Taj M’Teeter this summer (The Harris Teeter where M works), minding my own beeswax and pondering the dairy-free ice cream options. Ai Ai was in another aisle. I rounded a corner and an employee paused to greet me: “Praise the Lord! How you doin’ today?”

“I’m great, thanks,” I said, thinking, Did that man say PTL to me? (I often imagine hearing things.)

It turns out I heard him right because he followed me to the next aisle and said, “Excuse me, may I have your name? I’d like to pray for you.”

I was like, “Oooh, I’d love it if you prayed for me!” and I gave him my card, wondering where this conversation was going.

To make sure I knew his prayers were effective ones he clarified, “See, I pray in Jesus’ name.”

This situation was getting better and better for me.

“Me, too!!” I enthused, “And there is no other name under heaven…whereby we must be saved.”

This is what going to the supermarket is like for me now. Not always, but enough for me to not be weirded out by it, and for my family/friends to be cognizant of who’s around and to keep close tabs on me. FYI I am more given to friendliness now but am usually attended by a friend/family member who is even more given to vigilance regarding my welfare and is always watching for any sign of discomfort on my part, or situations that should make me uncomfortable but don’t since my social filter is compromised. In those fleeting moments when I’m allowed to push a shopping cart alone I am confident in my ability to gauge situations correctly – if anything is truly weird I’ll know it (while if it’s only somewhat strange I might need someone else to tell me so). And my newfound verbosity combined with my greater (if still uncontrolled) mobility makes me someone you don’t want to mess with.

That said, people don’t want to mess with me. People just want to say hi, tell me about something they’re going through, or just pray for me. Seriously, when I met that man at the supermarket it made me so happy. I met up with Boo Boo a minute later and couldn’t wait to tell her all about it.

A couple of nights ago I was up until 1am thinking about this post. But I refused to get out of bed and write it bc I know I’m supposed to Manage Me better. Thank the Lord that I’ve felt relatively good for the last couple of weeks, except for a few yucky headaches. So I’m experimenting to see if I can manage the headaches through proper rest and eschewing worry (easier said than done) bc I want to believe that I am FINALLY feeling well enough to be able to optimize my recovery instead of always struggling to keep my head above water.

I have always been troubled by my inability to read and pray like I used to. I tried to maintain an old-style quiet time at the beginning of 2012 – relatively early in my recovery when I was still insisting stubbornly that I would keep as many old practices as I could, and I didn’t fully understand the seriousness of what happened to me physically. I kept it up for a couple of months, but it became clear that I was not physically ready for any such thing. I’m still not – that’s why I write posts like The Short List and The Listener’s QT – this is how I live now.

It occurred to me, though, that I really miss spending significant time in prayer. About a year before my brain bled I decided that I needed to do a major spiritual detox. I see “detox smoothies” all over Pinterest and think detoxification is an easily understood analogy for this concept. By spiritual detox I mean that I was trying to rid my inner life of all the harmful, poisonous substances I ingested daily through proximity or choice via exposure to media, unedifying conversation, etc. FYI, I had no lofty motive like making myself more useful for service (although I recognized that this would likely be a useful outcome). It’s just that I thought (I still do, BTW) that one day in the future I might get Alzheimer’s or dementia as I age, and then all the bad stuff in me would be unleashed on my unsuspecting loved ones. Not kidding. That’s totally what I thought. And it totally happened – just earlier than anticipated and via a different kind of illness.

Good thing I prepared for it. Pfewf. Not that I was where I wanted to be in my spiritual detox state before I got sick – but I was a lot better off than if I had just been cruising through my days, reading and praying just enough to make a decent show of being a Christian. Your life is like a full glass – when you get bumped (and you will), something’s going to spill out. What’s it going to be?

I approached the spiritual detox in two ways: (1) The Word, and (2) Prayer. I’ve elaborated on how to use the Word of God effectively in 115. How to Fight the Good Fight. That’s one of my faves, and I highly recommend it. My issue now is how to continue the spiritual detoxification process now that my brain is different. Many of my old techniques won’t work anymore, but some do. Learning how to pray is one of them.

Note 1: This method will only work if you know who Jesus Christ is, and you believe He is who He says He is. Why? Bc Christ is the one and only access point to God the Father.

John 14.6 I am the way the truth and the life. No man comes to the Father but by me.

Ephesians 3.12 …we have boldness and confident access to God because of Christ’s faithfulness…

If you are unsure what I’m talking about, go here: Decision Day

Note 2: If you are already a believer and are depressed, the very last thing you want to hear is someone telling you that you feel like you do bc you are not praying enough, reading enough, trusting enough, etc. I get that. The implication (intentional or not) that I’m the way I am due to lack of effort on my part makes my hair stand on end. But as a person who has teetered on the edge of internal chaos for more than a decade (that’s right – I was totally like this BEFORE I got sick, too! I found God’s grace to be the only viable way for me to function so I loved talking about Him then. So much more has happened so I’m even more enthusiastic now! ) let me just say to you in love: There are definitely physical aspects to mental health that must be addressed. There is also a place for professional help (remember to pour everything you hear through the filter of scripture). However, you are responsible for exploring the limits of your mental capacity for wielding the Sword of the Spirit and communing with God through prayer. You will not know how much you can handle of these undiluted power sources unless you try. Take baby steps. Carry verses around on note cards, and start this Prayer Detox:

Prayer Detox:

Pre-Requisite: none.

Why: Believers have an all-access pass to the Throne of Grace. This pass was a gift from the Lord Jesus. It cost a lot. Everything, in fact – so use it! Show that you value the gift by using it. Alternatively, you can just encourage yourself to exercise your right. We’re big on claiming rights in America. Benefits include: peace. (Just that one is enough for me. Sign me up!) But prayer is also the agent whereby we get to plug in directly to the Divine and become personally effective – the mother, father, sister, son, employee, boss etc. God wants you to be. The Lord knows all about your situation, but you have the privilege of talking about it at length with Him and asking for what you want. Ask for guidance re. how to accomplish XYZ. When the planning stage is over you’ll need Divine enablement to do XYZ well and expeditiously. Overall, you’re looking to obtain the mind of Christ regarding your situation. When I don’t have it I’m a raging mess bc I worry that everything is spinning out of control. That’s what I mean about having a natural tendency towards internal chaos. I don’ t want to live like that.

How: I had the privilege of sharing Christ’s love with my dear friend L (in Oregon – the one who stayed with me at OHSU before my family could fly out). She is so hardcore and absorbs and synthesizes information like nobody’s business. One day I was over at her house and I saw my email printed out and posted on the wall. It included the old acronym, ACTS for learning how to pray. We learned it in Sunday School a long time ago, and I still reference it for remembering the topics I want to spend time in prayer about:

A: adoration

C: confession

T: thanksgiving

S: supplication

Side note on “adoration” – as you spend time in prayer pondering the attributes of God, the problems/issues you have lined up for “s” – “supplication,” don’t seem as big since you’ve just spent all that time remembering how able God is to deal with everything.

One more thing – pray scripture. Just pray stuff out loud straight from the Bible. If it’s in the Word you know it’s His will.

Logistics: I’m a big fan of kneeling. I am my father’s daughter, see? I got a garden kneeler (a simple foam one) from Target in Oregon and it was the best $5 I ever spent. When I get it back I’ll give it away since I just got one from Amazon. I’m finally ready to try kneeling again in earnest. Lately it’s been a PT exercise – and a painful one, at that. But now I’m going to feel free to put my hands down on the bed in front of me to stabilize and not worry about the physical exercise. This is about the posture of the heart. Regardless of whether or not you’re able to kneel, arrange your heart’s posture appropriately.

Mr. N (JJ’s maternal grandpa) gave me an article once to summarize and send to him in a big font since his eyes were failing. I think he also knew I’d benefit from the subject matter – it was about prayer and one of the suggestions was to use a kitchen timer if you’re trying to increase you’re praying time. I bought a cheap egg-timer from Winco, and pretty soon I didn’t need it anymore. I craved my appointment with the Lord, and since I wanted to do it I had no problem arranging my schedule/commitments to accommodate it. Yes, sometimes I woke up late and couldn’t spend all the time I wanted to in the morning, but evening worked, too, and my sister told me my whole family cried when they came to my apartment and saw my little prayer mat and kneeler in the corner where I had left them.

I love my phone (although I use it more for online activity than for communicating with others), so I’m going to use it instead of an egg timer. I’ll start with 5 minutes and increase it by 1-minute increments. This has been my method for aerobic exercise, and it has worked exceedingly well, and I think it’s transferable to my Prayer Detox. For one month I got strung up in The Vice (standing frame) every night at RIO. I used to watch the clock so I could say when my appointed time was over. See?

But pretty soon I was standing on my own for a long time. We played Scrabble standing up one day in OT and C guarded me as I played with Mommy at the tall table. C said she was ready for a break before I was!

Fasting: The Prayer Detox Plan above is actually useful for building into your busy lifestyle on a daily basis. If you want to take it to the next level I recommend a regular prayer/fasting practice. My old method was very doable – (I checked with the nurse at work, and she said it was okay for me – you’d do well to check with a medical professional, too). The point is that you do not partake in food for a day every (Time Period). Every time you’re hungry during that day you remember to pray (I used to pick a specific subject to concentrate on for that day). You also devote mealtimes to prayer since you don’t have to cook or eat.

16. Now is *not* the time for fasting…but maybe it is.

3 prayer requests 🙏🙏🙏

Please pray for (1) S is getting a new hip today!! 💗🔥💗We’ve been waiting for ten years for this. Pray for rapid healing and 📈 quality of life, and help for mom and husband!

(2) DB ‘s 🫁 need healing: pray for comfort and strength!

(3) Me: waiting on test results 😑. Pray for patience and a solution! 💗 #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

10 yrs!! Happy 90th Birthday, Ed 💗🤟

I will rise from waters deep

Into the saving arms of God

I will sing salvation songs

Jesus Christ has set me free…

from “What the Lord Has Done in Me” – Hillsong

I learned to love this song from students at the School for the Blind in Burundi ten years ago. In the 18 months prior to my AVM rupture (April 7, 2011) I filled my mind and heart with good things and when I lost everything I emerged from the Valley with a heart for humanity, a concern for the individual, and this song on my lips. They were among my first words – ask Mommy – when I was just babbling, this came out bc it was top of mind. So much has happened in this decade. Some of you have told me about the moment when you found out I was sick. God knew the circumstances and timing of my illness would be devastating, but that He would make it beautiful. “It is God who arms me with strength and maketh my way perfect.” Psalm 18.32 #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

The Nail Prints…

The nail prints are STILL in His hands. As my 10th anniversary approaches, I think more of the great darkness of the Valley. It is never far from me, but I am no longer afraid of it bc I remember so clearly now how the Lord made provision for me, even before I woke up. Still, I have more scars, physical and emotional, than I ever admitted. But I am also clothed with “strength and honor” (Prov 31.25). And the scars themselves pulse with life and power. Surely the power that raised Christ from the dead could have erased every mark of dishonor from His flesh. But the scars are still there. He “bore the cross, despising the shame…” and HE IS RISEN. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

🤟 learning New Things

Learning I could no longer play the piano was more crushing than learning I could not walk bc making music can express what you cannot. And then I realized I could not sing at church. I’ve never been a singer, but I always loved joining my church family in the songs we have loved for centuries and brand new ones. But I had very little voice/breath control for talking, and none for singing. But within months after beginning training w D & R I could sing (softly – Boo boo: you are still an alto) and it took a few yrs, but I could stand to speak publicly and control my voice and breathing. A then I started losing hearing. I play the piano by ear since I cannot use my eyes to read music, and since the hearing is going, my performance has….declined. It’s harder to hear my own voice in my head so my capacity to sing – alto, or otherwise – has declined, too. But Nurse P pointed out to me in #EMDR that although I was scared when I woke up, my body adapted to my new life automatically. My lungs had a TEENY TINY bit of damage on the bottom from the vent, but they figured out how to breathe lying in bed, and then sitting in a chair (that was terrifying, BTW). Eventually, I pushed my lung capacity to the edge then lost it again when my mobility declined as my hearing changed. But the Bottom Line = I CAN LEARN NEW THINGS. I was in Bujumbura with @jjburundi 10 years ago. This pic was the first time I saw anyone sing in sign language – we were visiting a L’Ecole Ephphatha pour les Sourds. And as I learn ASL I am DELIGHTED to realize I am becoming more receptive to ASL worship music interpretation. Music really DOES express what you cannot. I’m warning you, though – in every other context I burst out in very short sentences in an ASL/Cued Speech hybrid. That is NOT a thing. I’m just too slow/new at either to stick to one. And when I say, “short” I mean, SHORT E.g., “Lord, help me.” That’s the first thing I signed spontaneously. And yes, I use it a LOT. || PRAYER REQ: my ears are bothering me and my back hurts ||PRAISE: @erkep got a house!! We are so glad!! xoxo #strokesurvivor #avmsurvivor #lifeismysport #learninghowtolive #shreddedgrace

Feel the Beat…Praise Report!

Top pic: Dancing w Dr. Cheryl @powherchiro and then L foot clockwork 😑. Re. dancing: Super Dre @sdpphotostudio was enjoying it way too much 🤣🤣🤣. It’s important to follow the beat. She selected music and played it on her phone. But it’s way harder when you are going deaf. But deaf people love music, too. Apparently one is supposed to feel the beat – relying on the vibration of the sounds. I can “feel” rhythm as a pianist, but as I lose hearing, this is an entirely new ball game. There’s a lot of visual imitation and mental (mis)calculation going on. The learning process is hilarious. Andy Frankenstein did very basic Clockwork with me in 2011 when he taught me to walk. DLee @fyzicalgermantown upped the ante in 2018 when I told him, “I need info that will yield a sustainable gait for the duration of my lifetime” 😑. Then I started losing hearing and everything got thrown off. So now I’m STILL working on Clockwork – it’s been almost ten years, and the parameters keep on changing. But my capacity to adapt and learn new things is growing, too. 📈 Praise: I ran my first mile @alterginc since Nov 2018. No hip pain, greater joint control, reasonable breathing. The breathing thing is a huge confidence booster bc this is the first time I’m exerting myself with 🫁 known to be a tiny bit smushy on the bottom. 🤟. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace