I got sick in 2011 but this journey started more than a decade ago. || I appreciate your prayers, especially now that the urgency of the acute stage has long gone. 2018 was rough – but great, too – God led me to this old Journal entry (I wrote it the night I decided to move to OR to practice saying Yes to God), and He also grew my ability to search the scriptures bc although I have accepted these things as from my Father’s hand, life is still difficult. This Journal Entry was a clear declaration, but when I woke up I was like, *Ummmm….Lord? I didn’t actually mean it THAT MUCH.* But He knew that through the Spirit-led exercise of my cognitive functions I would acknowledge that this makes sense and I would plow ahead trusting His sufficiency. That said, I had no notion that it would hurt this much. I knew theoretically that I’d be disabled for life, but it only hit home recently. The DMV (unbidden) sent me my Permanent Disabled Parking tags and I wept when I saw them. But I am glad to be in the King’s service – and although He has every right to my unquestioning loyalty/service, He is patient, kind, and gentle – He lets me ask all sorts of questions, He doesn’t just make vague statements about His grace – He sent me help, and He acknowledges, as to Elijah, that “the journey is too great for thee.” God never diminishes my grief but equips me for this path that bears the unmistakable imprint of the Divine. I wrote in 2012 that every step is a choice. It still is. And every day still hurts, but not just with the ache of loss – painfully beautiful and wonderful things have happened that I would never have experienced if I had not gotten sick. I’m not great at talking about, or even tolerating the good stuff. But it’s there. Okay, FINE – I’m really bad at talking about it. Or I refuse to talk about it at all. (Don’t worry, this is a recognized “area of growth” for me.) In any case, I’m ready to say goodbye to 2018 and welcome 2019. Happy New Year. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace
You made Operation Lift: Burundi a HUGE SUCCESS. We exceeded the goal – Discovery School is moving forward with the septic system and the excess will go to a much-needed school bus || Joy gave me this scarf when I visited Burundi in 2011. I gave away almost everything, but I kept this. Africa will always be on my heart. Thank you for your kindness 💗, ning || THANK YOU for being a part of building Burundi’s future. Your generosity in standing with us is overwhelming. – Jesse and Joy Johnson
PS. Individual thank you’s to the people I have addresses for are forthcoming – I appreciate your patience as I’ve hit another physical rough patch. I know I say that ALL THE TIME, but that’s how the cookie crumbles. I’m grateful to have a Team to help me.
PPS. When I visited Burundi in 2011, Discovery School and the work in general were no where NEAR this level of development. It’s what we talked about in the ideal vision state. Of course, the ideal has not been obtained yet, but it was SHOCKING to me to see the reality being built – our technically, poured – check out these guys pouring a slab bucket by bucket. PTL. I explained to my people (Hi, Matt!!) that “PTL” is a nerdy Christianese acronym for “Praise the Lord.” But seriously? This is not a drill. It’s happening. And it’s changing lives on a scale that has the potential to shape a nation. Thank you for being a part of this.
When I did that vid with David for the gym, a question was, Summarize your Recovery in one word. Me: CONFIDENCE. I am confident in owning everything that happened, and every choice I made in the aftermath. I am confident in the Shepherd’s Leading and have no regrets. ||. Thank you, @the_lizmargaret !! https://lizmargaret.com/2018/04/09/meet-ann-confidence-without-compromise-1/ #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace
Just got an update. THANK YOU 💗. 17 Days left to close the gap. To be clear: The cost of the septic system is $15k. A generous donor gifted DS with half the cost. We just need to come up w the other half, which is entirely doable. That’s what I mean when I say “every gift matched through Mar 22” . $3.39k to go! Seriously, DS quality of education is in HIGH demand and they cannot serve a larger population without this septic system. And they cannot serve existing students with disabilities with the current restrooms. My friends used to carry my chair at non ADA spaces. 😢😢 FYI ADA compliance doesn’t exist in Burundi. Donate now at shreddedgrace.com – click on the Discovery School Eye/Sun. I’m working on individual thank you’s on behalf of my friends, Jesse and Joy, bc we are *very* grateful.
This is the companion to Ch. 1 of Vol. 5 Learning How to Reach | Shredded Grace: Reaching Higher. There will be episodes corresponding to the chapters every 1-2 weeks, plus super simple tutorials on transitioning from #wheelchair life to a standing lifestyle, and some other Recovery-relevant topics.
See you on March 15 for THE BIG QUESTION that must be answered before Recovery can begin:
IS IT OKAY THAT YOU LIVED?
Also available as a Podcast:
the latest ep has not replicated to iTunes yet, but it should by the end of today – you can catch up on old ones in the meantime.
Latest Episodes always at ShreddedGrace.com –>Media–>Video
I wanted to go with the less incendiary “You Lived.” But everyone else loved, “You didn’t die,” bc A) it’s an authentic example of SurvivorThink, and B) it’s a quote from my Precious Mommy. This is a Survivorship 101 “How To” Handbook. $20 on Amazon – always non profit. This is what’s inside: Welcome to Survivorship 101
If you didn’t die and you’re wondering what to do next, this book is for you. Specifically, it’s for Marlene – because she survived TWICE and there’s still a whole lot of living left to do. I got my friends to help me write this book to prove a point – Recovery is a Team Sport.
I survived a Cataclysmic Medical Event in 2011. When the dust settled I looked around me and began my adventures in RecoveryLand. Over the past 7 years I realized that “Learning How” has grown into “Shredded Grace.” FYI, we’re all Surviving SOMETHING. But even if you wouldn’t call yourself a Survivor you know one, or you will.
Learning How books are always Non Profit.
1. Introduction – Welcome to the Club
2. Is it Ok that you lived? Decision Day – Ruth
3. There’s No Crying in Baseball – Why walking is SCARY but you should do it Anyway
4. How to Cultivate Survivor GRIT – Matt Hankey
5. The Problem of Pain
6. Best Foot Forward – How to Use a Medical Resume
7. I’ll Fly Away – Mental Health Issues – the Marine
8. The Power of Possibility – A Practitioner Pep Talk – Coach Randy
9. How to Find Help – Trainer David
10. Why Survivors Have Body Image Issues – Jessica Smurfette, RD
11. The Measure of Success – Matt Hankey
12. The Bossy and Sassy Show – How to Choose a Medical ID – Megan
13. We Can Hear You – What to do when Someone You Love is Asleep in the Hospital
#avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive#shreddedgrace
Thank you so much for your kindness. Consistent communication has never been my strong point. Last time I checked I had 13,000 unread emails in my old account. 10,000 were from BEFORE I got sick ROTFLOL. I realized, though, that I probably didn’t tell you guys a reasonable summary of the last few years. So this post is specifically for Mr. and Mrs. JJM and Ricardo!!
If you haven’t listened to my 2017 update:I say that the blog served its purpose and it was very healing in its own way. I realized it was my way of saying goodbye to my Old Life.
For the full story of how I went back to Oregon in 2014 and got rid of my earthly possessions, see Randy’s Book – Vol. 3 Learning How to Run: Life is My Sport, Ch. ? “The Full Workout”.
I did not really have to deal with the full emotional impact of what happened to me until I went back to Oregon. On the day I met her, my MHP was like, I have NO IDEA how you did that without help.
Well, actually, I DID have help. I had met David 3 months before. I met Randy one month before – and the two of them literally kept me alive. I made some totally passive aggressive cries for help – they were really whispers – which they pretended not to notice, but they established a routine and gave me something to look forward to once I returned (I was only going to Oregon for a week, but spent the rest of 3 months at Chez Boo Boo).
Ann and Joyce totally met one night at a pizza place near the Chapel while I was in Oregon, specifically to spend time in prayer for me. Thanks, guys xoxoxo – and of course, I spent a ton of time in prayer myself.
Excerpt from New Book – FYI I wrote down EVERY SINGLE ridiculous thing David and Randy ever said to me. I keep a digital OneNotebook on my phone. I originally intended to document the entire process so that on the day I got burned I could go to them and say, You lied to me. I don’t like liars. It’s a good thing I never liked you anyway. Spoiler Alert: The Lord had other plans. Those notes turned into two books bc I got tired of waiting to be burned. PS. I’m still keeping that notebook updated.Maybe 3 weeks after I had met him, I walked into the Running Gym and announced to Randy, Randy – I decided: Ain’t nobody gonna die. I mean, if I didn’t die THEN (during the bleed). I’m not gonna die NOW.
I’m not sure that Randy was overly comforted by my stance, but it was mentally helpful (if not exactly healthy) for me bc I was able to get organized and ready (planned meetings at all hospitals, with nurses and my surgeon, and an Intel “Hello” Party). And we did tons of other stuff I blocked out.
We got it done.
But the event triggered my PTSD. Here’s a summary from the mental health chapter of my new book, publishing next week – Vol. 5 Learning How to Reach, a.k.a. Shredded Grace: Reaching Higher – Ch.7 “I’ll Fly Away”
- April 7, 2011 (Portland, OR)– AVM Rupture + Massive Stroke, Craniectomy
- I was asleep for over a month
- June 23, 2011 (Washington, DC area) – discharged from inpatient, Mommy Daddy relocated me to their Empty Nest so they could take care of me
- April 1-7, 2014 (Portland, OR) – after 3 years of healing I returned to OR to dispose of my earthly possessions (the contents of my Apartment had been put into storage)
- Q3-Q4 2014 – I knew something was wrong. I couldn’t settle down and do anything – I just felt very troubled
- Dec 2014 – started asking for help. Confided in close friends, asked Daddy to pray for me, consulted PCP and Neurologist
- Jan 2015 – formally diagnosed with Delayed Onset PTSD, began treatment with MHP (Mental Health Professional)
- 2015 – several (4 or 5, I think) very dear friends died. Other stressful things happened.
- 2016 – began Medication for PTSD Dreams and other symptoms (with NP5)
- Spring 2017 – PTSD symptoms came under control, I took a few months “vacation” from Treatment to try my wings
- Fall/Winter 2017-Present: Bumps in the road prompt me to get the full work-up physically and mentally returned to treatment with both MHP and NP5
**Notes: My MHP is a Social Worker (LCSW) – I always had a Social Worker assigned to me at the hospital. This one is in private practice. NP5 is my 5th NeuroPsych. Although he probably wouldn’t classify himself as an NP, I retain the naming convention for convenience, and he does have some neurological expertise. I always had an NP at every hospital. NP5 is in private practice.
Physical notes since 2014:
- Stopped and started eating food several times
- Mental Health has a HUGE physical impact (duh) but now I’m in the place where I’m more settled in this body and not as scared of everything.
- Basically, I spent the last 4 years training SUPER HARD to meet the demands of private and public life, but also bc every minute I spend with D and R is a minute I don’t have to worry – it’s a safety, stability, routine thing that isn’t surprising given the PTSD/Survivorship
- 2 subtle labral tears – left hip – due to use, NOT overuse – the price of mobility for me. Avoided surgery – Coach R rehabbed me
- Major shoulder and arm pain Fall 2017 – Winter 2018: NOT good. Concentrating on breathing, rehab exercises, restarted treatment with MHP and NP5
- David is building me back up again!!
- I got so much better – at Thanksgiving I literally wore a sling. In January I wrote a book. However, I’m still being super careful, breaking every 8 minutes as I write this, and I’m wearing a compression sleeve.
The easiest way to keep up with me is via Instagram.
But hey – I forget if I told you – I have a Podcast. I did 15 episodes in Nov-Dec 2016. I’m resurrecting it for the New Shredded Grace. You can subscribe via Apple iTunes or Podbean. I will be updating the podcast regularly starting next week – Lord-willing. Each Podcast will correspond to a chapter in the new book. But in the meantime, go listen to the existing episodes. I recorded the majority of them on Boo Boo’s patio. You can hear the fountain in the background, and basically, I just crack myself up. The only reason I made that podcast was for Kim and Joyce, BTW – so if it sounds like I’m just talking to my friends, I am.
Shredded Grace Podcast
Shredded Grace: Reaching Higher – launching next week!
When I first started writing publicly I named everything, including my non profit, “Learning How”
Now that I’ve been Recovering for almost 7 years, “Learning How” has become “Shredded Grace.”
I’ve learned a few things, and I’m ready to talk about them. I wrote this book in response to Marlene’s question, “What is the most important thing necessary for Recovery?”Marlene found me in 2013 on Pinterest. She is a Hardcore Survivor. The book is a very long answer to her question. The corresponding Podcasts and YouTube videos will be the episodic version. A LOT of my friends helped. This was a team effort on purpose. The message is this: Survivorship and GRIT do not happen in a vacuum. We learn from each other. And FYI, there are a lot of us out here.
We belong to a very exclusive club. Membership is determined by the fact that you survived a cataclysmic medical event and/or were the victim of violent crime. Obviously, this is not a club you WANT to be a member of – I’m just saying that in case you are given circumstances that qualify you, take a look around, make yourself at home – put your feet up. You’re in good company.
Here is a preview:
Table of Contents
- Introduction – Welcome to the Club
- Is it Ok that you lived? Decision Day – Ruth
- There’s No Crying in Baseball – Why walking is SCARY but you should do it Anyway
- How to Cultivate Survivor GRIT – Matt Hankey
- The Problem of Pain
- Best Foot Forward – How to Use a Medical Resume
- I’ll Fly Away – Mental Health Issues
- The Power of Possibility – A Practitioner Pep Talk – Coach Randy
- How to Find Help – Trainer David
- Why Survivors Have Body Image Issues – Jessica Smurfette, RD
- The Measure of Success – Matt Hankey
- The Bossy and Sassy Show – How to Choose a Medical ID – Megan
- We Can Hear You – What to do when Someone You Love is Asleep in the Hospital
I love this book, but I hate this book. It makes me want to poke my own eyeballs out bc I had to think about a lot of stuff I have intentionally buried. However, based on the interactions I have had as I’ve grown in my role over the last few years, people want to know this stuff. My readership is small – however, the Lord makes sure the people who “need” to talk, find me. This book is for them.But if we’re gonna be real about this, We are ALL surviving SOMETHING. And if you wouldn’t call yourself a Survivor – this book will make you a better Advocate. You know someone who IS a Survivor, or at some point you will know one in the future. And yes, WE NEED ADVOCATES. Please – if you see someone who needs help, especially someone who is unable to speak for him/herself – step up to the plate. Thank you.
Stay tuned 🙂 and thank you!!
I REALLY appreciate the people who read this. I’m sorry I’m so behind in moderating this blog!! Life keeps on happening. I got my meds adjusted by my psych after explaining everything to him exclusively in terms of Harry Potter 😂😂, almost freaked out during dental x-rays, etc. but overall my physical condition is improved vastly compared to two months ago. 🙌🏽 we are about a week away from launching Shredded Grace: Reaching Higher. Stay tuned…
I drew this pic 8 years ago. There’s a lot of spiritual imagery mixology going on, and it’s a stick figure, but there is still power in this concept. And when I read my note, i burst into tears: VICTOIRE REQUIRES CONFLICT – a context in which to demonstrate victorious behavior 😢. I was trying to learn French when I wrote this. I was searching my prayer journals for guidance tonight. This has happened SEVERAL TIMES 😳😳 a water tight paper trail showing the Shepherd’s leading and preparation. It’s the scariest thing I’ve ever read. But thrilling. But still scary. Im hiding these books in my closet again. I wrote about this in my new #shreddedgrace book. Please don’t ask to see these journals, I’m still too weirded out by it and am going to bury them under some linens. But I hope you’re encouraged by this thought. I am. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive
Full-On Book Writing Mode. The Guys are helping me this morning and Ed/Shirley are holding my Chocolate Chips. I need a lot of help this am bc today’s Chapter is “What to Do if SYL is Asleep in the Hospital.” SYL = Someone you Love. I am occasionally contacted by individuals in this situation. There are so many variables – nobody can say definitively what’s going to happen. But you DO need to know One Thing: WE CAN HEAR YOU. Both the content and tone of voice. I speak from personal experience – but the research is adamant that we register everything even if we can’t communicate back. Please let this knowledge influence what you say, how you say it, and how you conduct group visits. FYI, “I love you,” is always good to hear. xoxoxo . #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace
By now you know that I wanted to be a missionary. I was beyond thrilled at the idea of joining the King’s Overseas Service. What an honor. But He had other plans.
I dreamed of Africa in The Valley. I had visited and been invited to move to Burundi permanently and I was 4 days away from asking my Oregon church to send me but then something exploded in my head and left me for dead.
But I didn’t die. I wept in my sleep. I saw the children I had met at School. And their singing haunted my dreams.
Burundi has a chilling history of violence, and the Johnson family has served the people there for generations. The Burundians respect and love them bc they stayed when they didn’t have to. Among the many ministries that Jesse and Joy Johnson (3d Gen) are involved in is the Discovery School – they make top quality education available to a population who would never have had access to it. They started 10 years ago with 80 students and a dream. Now they have over 1000 students and they are growing. It’s no longer a dream – it’s happening – they are sharing the Good News, employing those who were hungry, and raising the standard of education. They have the opportunity to impact the entire country of Burundi.
Now it’s time to Build the Future. But in order to BUILD HOPE you have to meet Basic Needs. Discovery School needs a septic system to service 38 new restroom stalls on 4 floors. They are only building 2 floors first, but they need to to build the entire septic system. Total cost = $15k. Agenerous matching gift is in effect from Feb7-Mar 22. Every dollar donated will be matched up to $7500. That’s right – the cost just got cut in half.
Discovery School is unique in that it offers Special Ed so kids with learning disabilities can succeed, too. They also serve kids with physical disabilities. One student, A, cannot make the walk to the existing restroom. His friends used to carry him on his classroom chair (hence, Operation Lift). This is no longer an option. They need new bathrooms.
The first dream I had after I knew I couldn’t walk was that I was able to make it to the bathroom on my own with a walker. When I first experienced leg pain after learning to walk I didn’t drink any water for a week so I wouldn’t have to walk to the potty. I was too scared. And when I first went back to church I only stayed for one meeting bc I didn’t know how to fit my wheelchair in the restroom.
Restroom access is a very real concern in my world – but it’s a problem that can be solved at Discovery School with your help.
Need $15k for Discovery School Septic System – 38 new Restroom Stalls
Matching Gift in effect up to $7500 Feb 7-Mar 22
Double your impact by going to ShreddedGrace.com – click on the Eye
Or you can go to CMML directly: Operation Lift Discovery School Burundi
Thank you so much,