Abiding = 🔥

What a joy to participate in the virtual Lord’s Supper on Sunday!! I haven’t been to the chapel in over a year, and I confess I cried as I scrolled through the thumbnails of my brothers and sisters. And then KRK preached 🙌. However, apparently exposure to sound aggravates whatever is going on in my head. Also, the last time I saw them over the computer was in the vid Kim made me while I was in the Valley. I had become unresponsive, but the docs said familiar voices might help, so Kim made a vid of my Chapel Family talking to me. Dude – that is one of the sweetest and most troubling memories 💗😢💗. Anyway, I’m really struggling to figure out my new ear and balance parameters, and as much as I believe in the discipline of the body and the mind as taught in the scriptures, my power depends on the extent to which I can abide in the Vine. I am extremely limited. But Christ renders the idea of capacity immaterial. (Pic: our dogwood is getting ready to bloom!) #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

Resource Scarcity

I was doing pretty well with this whole COVID-19 business until I heard a PM use the word “ventilator.” And I was all, AAAAHHHHH! Bad things. NOT GOOD. (Flashback.). And then I learned that in the absence of adequate equipment hospitals will have to prioritize access to these ventilators. And my heart went out to the people having to plan ahead, and the patients who are dreading this. My Survivor friends often deal with questions of the value of their life vs. the resources consumed in saving/maintaining their lives. This is DEEP WATER with no easy answer. All I can say is that my AVM Rupture taught me God’s value for the individual. He asks us to turn our faces towards Him no matter how we feel. And He demonstrated the value He places on human life by giving us His Son. And then He demonstrated His power by raising Him again. I don’t need to worry about whether or not I will have access to toilet paper or a ventilator. Resource scarcity is not even a thing with My Father, but our world functions within the boundaries of physical limitation. Praying for the professionals serving the sick and those who are vulnerable tonight. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

Other Pathways

When I started to wake, but before I could talk, a CNA named Jessie took care of me. One night – it always seemed to be night – she clipped my call button to my blanket and said, “If you need me, press this button. Even if I don’t hear anything, I will come help you.” 😢 she was so kind. I’m learning Cued Speech. It’s NOT a language like ASL, it’s a system of hand movements that boosts lip-reading accuracy from 30% to ~100%. It makes speech visible and provides access to language so that literacy rates skyrocket. *…faith comes by hearing, and hearing by the word of God…Romans 10.17* Wm. M. points out that “to hear” is to receive the word, with an open 💗 and mind, by whatever means. God’s word is living and active and is not confined to auditory pathways. So I’m exploring other pathways just in case. You do cued speech while you speak, so it’s a good starting choice for me – learning it is primarily to help others, but it will also improve my own lip – reading capabilities. The problem is that the vacuum cleaner in my head is very distracting and makes the one-sided loss harder to manage. Also, I must acknowledge that the R ear could go as unexpectedly as the L. So I’m preparing bc there was a time when I could not understand speech. I never admitted it, but it has marked me forever, and I will do what I can to NEVER let that happen again. When Jessie told me to call her, I understood, even though I couldn’t talk. And as I remember her kindness I pray for the world’s medical professionals. Thank you 💗#avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace NOTE: my lips should be shaping a word. Cued Speech requires on the combo of hand and lip movements. I’m working on it. It’s a huge motor skill and cognitive challenge

Isolation

We are all nice and snug at home, enjoying the mandatory break from appointments. PTL Mommy Daddy arranged over the phone to consult after a month, and I am SO GRATEFUL the Lord arranged the timing of this so I got the bulk of my medical rounds done BEFORE we went into seclusion. Chronic illness is already isolating, though, even if you see people regularly. Not to be negative – it’s just a fact. Which is why God taught me the discipline and joy of solitude in the 18 mo. prior to my illness, and why the constant divine dialogue persisted from my Old Life, through the Valley (not kidding ), and continues now: Reverence and comfort combined in an everyday conversation made possible by Christ – Great is the Mystery of Godliness. However, God’s pattern is also to reach humanity via humanity, and the kind and practical gifts of love and service have been so precious since I first got sick. The latest examples were my sweet friends who texted me this week like, Y’all need anything? Can I stop by with groceries? I may not be able to show my gratitude in an equally practical way, but I talk to God all about you and your thoughtfulness. And if you’re able, I encourage you to reach out (digitally) to anyone you know who might be feeling particularly alone. xoxoxo #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

I pushed him back 😑

I’m taking a couple weeks off. It’s better if I stay home with Mommy Daddy, who have canceled Daddy’s appointments this week. 💗 I needed a break, anyway, since I’ve seen SO MANY docs lately. But I’m sad to not see The Guys even though Sister Maria pushed me last week. He was not pushing me to work harder, he LITERALLY PUSHED ME 😑 While carrying an uneven load Zercher style, marching in place w eyes closed (briefly). PT’s have been pushing me around since I learned to sit, but still. He claimed to be training my Fear Response bc my breathing is bad, etc. I pushed him back 😑. Then Jess came to visit and I told on him. Then I told Trainers J and E, the Cafe staff, Driver D, Coach R, and my Dental Hygienist. 😑. But truth be told, there is always pushing & shoving 🤣🤣🤣. Coach R runs a very tight, but less antagonistic, ship. But I’ve observed since 2014 that his methods yield a near 100% compliance rate. I pep talked this one pro who plays abroad but came home for surgery and rehab, Just save everyone some time and do what the man says 😑 🤣🤣🤣. While we pause the BPNA I will do the HIIT cardio they have both recommended. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

Shhhhhhhh!

Saw the Neuro Otol today and got a script for Vestibular. Andy Frankenstein and M37 did Vestibular. So does DLee! Woo Hoo. I have 3 outstanding Rx: (1) PT – Vestibular (2) PT – L Hip Rehab (3) Occupational. I will schedule these once I procure (non)medical companion care as appropriate. Please pray (1) For the provision of help so I can receive treatment (2) My adjustment to a quieter world, (Yes, I have one good ear, but Hearing Loss is one of many things I’m dealing with, e.g. It sounds like I have a vacuum cleaner in my head, also, one sided loss means I cannot verify the direction of sound, which is problematic from a PTSD threat assessment standpoint) (3) Mommy Daddy are jumping through the final hoops for Gall Bladder removal. and THANK GOD: for my friends – my Wingman today sent me a typed summary of the visit. And my friends, who used to carry my wheelchair up and down the stairs before I could walk, take special care of me in parking lots and in navigating new clinics bc they know I need more help. And I continue to be grateful for such a skilled and compassionate medical team. Yes, uncool stuff is happening, but the Lord has given me a TON of resources. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

Thank you!!!

Thanks for praying. That Really Hard Thing ended early – so we are going to see Sister Maria today!!! No results yet – they will take a couple months, but X’s responsibility is over – all the hard work is in the rear view mirror. Girlfriend got spirit, that’s what. She did not back down and it was immensely gratifying to see – she did great. It was wonderful for me to participate in this process – We have been friends for 20 years with a long hiatus around when I got sick. But it has been one of God’s choicest gifts to me – bringing X💗 back into my life in 2018 😊. And you should see how she takes care of me 🤣🤣. Of course Imma take her part, too 😑. Over the past couple days we were conscious of your prayers and were so grateful for a heightened awareness of God’s presence. Even in scary, difficult circumstances, it is wonderful to be with the Good Shepherd and I rejoice to be under His authority, care, and protection. I bear the unmistakable marks of Trauma on/in my body, but I have been informed that I also have the conspicuous bearing of a Daughter of the King. Complete strangers in the hospital started noticing this while I was still asleep, and I have gradually been told of their observations. I ignored it for a while bc it was kinda weird. But I realize now that if people could tell I’m different when I was still asleep…that’s a good thing. And I LIKE being different. The God of the universe knows my name!! 🔥💗 And you know what? He knows yours, too. 💗💗💗 #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

Prayers – A Difficult Task W-F

The BPNA is going so well. My Guys are more than equal to this – they are grounded in the fundamentals of kinesiology and I respect their knowledge and follow their teachings. I just let the sass out bc this entire situation is ridiculous (truly, we are doing serious work, but they are still hilarious), but also to let them know in code that I’m scared. But progress is happening 🔥. Please pray for continued results and ESPECIALLY: my friend X💗 has to do something really difficult Wed – Fri and I am accompanying her. This is a path aligned with God’s principles, I believe in what she’s doing, and I am HONORED to stand with her. But it’s still so hard – it will be a grueling 3 days physically for me, and emotionally for her. We have devoted time to spiritual preparation for this, and thank God that He is our portion and makes us ok regardless of outcome. Please pray for grace and protection.Its GAME TIME. Thank you!! #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

32%

I scored 32% accuracy in L ear speech recognition yesterday.  I was in the 70’s only 3 weeks ago.  I was DEEPLY INSULTED 😑, but it’s fine, I promise. I am waiting on more docs and test results but do not expect any material info, so I launched my Building Neural Pathways Agenda (BNPA) last week.  It’s going SWIMMINGLY.  I said, I need XYZ feedback from you so I can learn to manage my movement and increase spatial awareness given these new parameters.  I believe in the clear communication of goals and expectations 😑 and although no one is happy I’m dealing with more stuff,  God have me people with the vision, expertise, and willingness to try my experiment with me.  🔥🙌 PTL I knew how to take direction in a gym beforehand and I woke up with a teachable spirit.  In addition to hearing and balance, I’m dealing with girl issues 🙄😑 that are exacerbating it but are being addressed.  The sensory disruption made me unstable, bumping into things, almost falling a lot, having trouble managing my chewing and swallowing.  The testing was + problematic from a PTSD standpoint.   But it’s settled down and I’m a different headspace bc of my BNPA.  FYI the BPNA was my idea bc I was getting frustrated 🤣🤣😑😑 I’m pleased w this experiment so far bc having a plan and being supported makes me feel better.  And training has been successful – I’m getting really helpful coaching and form adjustments that boost my mobility with less reliance on visual and auditory cues.  This am Mommy told me I’m playing the piano louder.  That’s bc I have to isolate the melody more bc I’m having trouble distinguishing some tones 😢. I’m not concerned until I start talking loud like Uncle Bill.  I miss him so much 💗.  Thank God for people who choose to be your family. Please pray (1) Imaging and final clearance for Daddy’s Gall Bladder removal. (2) Strength for Mommy (3) Successful BPNA and energy for me EVERYTHING takes more effort. (4) Logistical help for me – exploring options (5) Wisdom in choosing the right treatments (6) Return to OT – I want my kitchen mobility back 😞|| Thank you to my kind friends who have assisted me in driving and navigation – I really appreciate it. 💗

Thank you!

Thank you for praying for me!! My friend from elementary school took me to the test and Mommy collected me. It was harrowing only bc the reactions they induce and measure are fraught with significance for me. But the lady testing me was FANTASTIC. And now I get to see Trainer D and tell him all about it! Thanks so much for your prayers 💗. Mommy made these cookies last year. I forgot to photograph this year 🤣😊. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace