Update: The In Darkness Sing blog at JenniferSaake is experiencing prolonged technical issues, so I'm temporarily posting back here on my old Stroke of Grace blog. (You will notice many typos in older posts. I intentionally never corrected them, as they helped document my cognitive abilities at various stages of recovery.)

Thirty-nine-year-old Jennifer Saake (founder, Hannah's Prayer Ministries), experienced 6 strokes via vertebral dissection at a chiropractic office, including brain stem and cerebellum bleeds, in Oct. 2011. Jennifer remained hospitalized for nearly 2 months and was not expected to live (near death experience) nor recover, but if she even survived, she was slated to live out her days in a nursing home or, best case, to maybe come home wheelchair-bound and needing 24-hour care. At 5 years, 7 months, God clarified Jennifer's theology on healing and showed how He was writing her story from the beginning.

Jennifer is currently writing more books and stays active on Facebook, Pinterest, and Twitter. Stroke of Grace became In Darkness Sing in early 2018 and has moved, along with all five of Jennifer's active blogs, to one location at JenniferSaake.com. (Please see temporary update note above!)

Saturday, February 27, 2016

But it was a MASSIVE stroke


Fascinating conversation with a lady in my gym class last week. She learned I am a stroke survivor and I learned she is a caregiver for her husband who stroked less than a year before I did. We even were in the same hospital, one after the other.

It sounds like he is still mostly bed bound, unable to care for most personal needs. I would guess she's a good 20 or more years older than I am, so I would imagine he is too. We were talking about stroke deficits and recovery and she kept looking at me funny, shaking her head and interrupting me with, "But you don't understand. His was a MASSIVE stroke!"

My heart goes out to both of them. It truly does! But I left the conversation with the profound feeling that she was the one that didn't understand my story, what God has done, the living miracle illustrated in my very existence.

It doesn't get much more massive than not being expected to make it to the hospital alive, "multiple catastrophic strokes," "not a candidate for rehabilitation," never come home, live out her life in a nursing home, two emergency surgeries on Thanksgiving day, never walk again...

But God...

Would He be any less good, less in control, if all those medical predictions about my life had come true, as some of them have become this man's reality? No.

Still, where I am today fails to negate the massive level of injury where I started, the journey we have endured. It blows my mind that where I am today is so far removed from where I was that a caregiver cannot even comprehend the transformation! I feel I had 4 advantages:

- Location of Injury. Every stroke is different. Every stroke is bad, but the exact constellation of deficits that an individual experiences is going to be unique to their exact brain and what clusters of cells got killed off. There are a lot of issues that can be rather universal. I frequently find others who could not walk, speech was impact, or sight, or hearing... Once brain cells stroke, they die and don't come back. The individual brain is responsible for what skills it will rewire to take over substitute areas of life skills. I likely will never drive again. Homeschool teaching is in my past, but not present, nor likely future. Kendra can do both of these things again but is still in a wheelchair, while I have been walking for a few years now. We both are set off by loud noise, but I have significant hearing loss as well, while her hearing was hardly impacted by she has had far more serious dental complications than I have. We both had brain stem strokes (among other areas of brain death). What made Mr. Pool Man's massive stroke deficits so long lasting might be where in his brain he was injured.

- Age. In brain health, each day, each week, each month, each year, not to mention decade, matters. Identical injuries in brains two decades apart, heal completely differently! There's a term in rehab called "plasticity of the brain," your brain's ability to rewire and make new connections. In a very real sense, it is biologically much much harder to "teach an old dog new tricks" simply because this mechanism that God designed to work so rapidly in as an infant unlocks the big world around himself, steadily declines with age. At 39, as I kept breaking medical prediction after prediction, I was told that if I had come in a few years later my brain would have been too set it its ways to grasp my new skills, that, amazing as my progress was, they attributed it to my youth, that by 50 I wouldn't have been capable of a comeback.
I have to think part of this explanation was based on those who do not believe in God, trying to provide themselves with a "logical" answer to a miracle they were witnessing. However, there truly is a benefit to youth when faced with brain injury!

- Determination. I don't quite know how to describe this factor without sounding like I'm patting myself on the back. And I DO want to stress that this is only one factor and can only take a person so far. (I remember laying in bed many months after the strokes, needing to go use the restroom and dreading the process that would be required to have my husband assist me to get there, and crying, "If sheer will were the determining factor, I would absolutely be walking by now!") However, I know of stroke survivors both younger and less debilitated than I was, who stroked even before I did, who don't have a fighting spirit, who gave up trying to wring every ounce of gain out of recovery, who are still dependant on others for basic hygiene and care.

When a therapist sees a large supportive family surround a survivor, they have been known to say, "I'm sorry." Support like this can be a double edged sword, because there is great emotional benefit, but can lead to physical stagnation as the survivor has so much done for her that she never pushes herself to conquer more. Recovery is hard work, but however hard, I often push myself even harder than I should. At least two outpatient therapists actually got frustrated with me for pushing myself too long and hard.

God - Yes, He is good, no matter what outcome He had chosen for me. For reasons beyond my understanding, His plan has been more recovery than any medical professional ever dared dream for me. I am thankful. However, I feel humbled, nearly apologetic even, when talking to someone like this lady in the pool, that is living with my "shoulds" and I know my recovery to have extraordinary, supernatural elements. I kind of feel that I've "cheated" a bit, that comparing an average recovery with a God-aided one isn't fair.

Changing gears a bit, I would like to introduce you to one more friends who had a massive brain stem (worst kind) stroke. Katherine Wolf (video and several pictures above) of Hope Heals (ministry) was only 23-years-old, had a 6-month-old baby, when her stroke required a 16-hour brain surgery and 40-day ICU stay! This was nearly 8 years ago. She and her husband, Jay, have written about there story, both the physical and the spiritual odyssey, in a book also called Hope Heals. I am excited to be expecting a pre-release copy in my mailbox this week. I expect to be sharing more amazing parts of their story in days to come.

Wolf family

Thursday, February 18, 2016


Lake Tahoe, California
I meant to write this on Monday, the day that was exactly 23 1/2 years since our wedding. It's Thursday and I'm finally typing. Those first years of stroke recovery crawled so slowly, the hours and days were endless. This blog was a lifeline, a desperate outlet to process the journey. I guess my far-less-frequent dependence on blogging reflects less hours parked in a recliner and more time actually trying to be actively engaged in striving to keep up with living life! :D

Lake Tahoe, Nevada
At this point laundry and dishes and therapy (water aerobics) seem to take all I've got, more than, actually, so there is still little time for much else, but for a long time it was questionable if I could even take these things on again at all! I missed a few months in a row, but am back to fairly regular weekly Bible study one day a week and regular church service with Sunday School - these are my fun outings and socialization each week. I usually manage 4 - 5 weekly meals now, especially if Rick helps me walk through menu plans at the start of the week. Laundry seems perpetually bent on overwhelming me (I think that is true of most larger families though!), but I do manage to enlist my 10-year-old in closet close-hanging help and get fully caught up once a month or so now. I have otherwise primarily been doing the majority of the sorting, washing, drying, folding (neat wadding anyway) and putting away, for a busy family of five for well over a year now! Kathy still comes every other week and helps me catch up on vacuuming, dishes or whatever projects are currently beyond my physical skill set. Therapy takes up two mornings most every week. Thankfully, medical appointments are down to just a few per month now (2 or 3 a DAY when I first came home, and still 2-3 per week even a year or so ago).

In nearly a month, I know there has been a ton I've wanted to record. Let's see what of it I can actually remember to get posted today...

Last week, visiting Lake Tahoe with extended family. :)
I love bears! I'm standing by a stuffed on and wearing one on a necklace in this picture.
Going back a few weeks, let's revisit the monthly lady's luncheon at my mom's and Kathy's church (an event I do try hard to attend but that gets preempted by a doctor's appointment more often than not). I actually made it for the first time in several months and discovered two interesting things about my body that day. When I first got there, I was able to come up the sidewalk with my cane in my stronger hand and a 9x9 dish rested over the crook of my left arm, no troubles. By the time we left, after a couple hours of maybe 20 ladies chatting and eating, my physical function had so diminished through that use of mental resources needed to interact and "be," that I picked up the same dish with my right hand, set it across my left arm just as I had done a couple hours prior, and my arm simply gave out on me, refusing to support the wait, and sent the stoneware shattering to shards against the hardwood floor. :( It was a good couple of days before I fully regained prior range of motion in that arm. Amazing how every single activity that our bodies preform is mentally taxing! I think normally the brain has sufficient resources to keep each social expense from becoming so physically costly, but when the brain sell reserve is already diminished, the costs of daily living become more readily apparent.

My newest spurge. Purchased at the same gift shop where the bear lives. :)
In the midst of that same ladies' luncheon, I discovered how loud and distracting an echoey a room can be without wall-to-wall carpeting. I never had opportunity or need to take note of this before. The room even had a very nice, large area rug covering much of the Pergo, but I was amazed to discover how the bits of bear floor bounced sound off the walls! Within an hour or so, I was nauseated and my entire torso was tight and achy with the strain of trying to follow distinct conversations and I excused myself from the room for a bit then stayed with a very small group near a connecting hallway for the rest of the hour.

Camp branch of my family along with two youngest Saakes.
Several months back, somewhere before Thanksgiving, my more stroked knee started becoming nearly unbearably painful. I could still walk on it, yes, but it hurt pretty much all the time and was excruciating after being bent and straightening again (like sitting down on the floor then getting back up). I noticed it significantly improved over several days at my in-laws' house over Thanksgiving, then was back to being just as painful within a day or two of getting back home. My conclusion was that my more-stroked knee was protesting our cement slab floors as Mom and Dad Saake are on a raised foundation thus have a little more give in their floor.

Today, nearly 52 months.
I used that drug-store Dr. Shools' machine and invested in a good pair of semi-custom insoles and started wearing them in shoes and slippers, every moment I wasn't in bed or in the pool (but wore good supportive water shoes in the pool too). Within half a day, I started getting some pain relief and within a week my knee was hardly painful anymore at all. This lasted a few weeks. 

View from Lake Tahoe.
The knee continued to stay pretty happy but the ankle, achilles tendon, and down around the back and inside of the foot grew progressively more and more painful until I could no  longer do many movements at therapy nor hardly take a step. New working theory was that my foot had relied on my knee for so long, pushing it out of proper alignment since the strokes, that now that both joints were being forced to work correctly, the foot weakness was being manifest and not happy with the new plan!

This was an "oops" shot of my own foot, but I think the interplay between light and shadow is beautiful. :)
A few weeks ago, we stopped the orthotic insoles to give the foot a break. The knee picked a little pain back up, the foot released a lot of pain, but now the hip has decided to become my problem joint! I'm guessing the couple months training with the insoles did a bit of teaching to both the knee and ankle that now both seem a little unhappy for the lesson in proper stepping, but are generally fairly good, but the hip is now taking up the slack for my limp change??? It gets bad enough that I would often seriously consider a wheel chair again, if not for the fact that the only relief to that joint comes from laying flat or sitting with my legs elevated. Unless I got one of those annoyingly bulky reclining wheel chair, the sitting position with my legs down would be pure torture! The story goes on. I wonder how long this chapter lasts?

Feb 13, 2016, Carson City, Nevada airport
My brother and sister-in-love visited town for nearly a week. It was a wonderful visit, but a good reminder that I still am no where near normal energy levels.  I'm very glad they were here. Also glad to return to my quiet routine.

One highlight of the visit was getting to go with them to watch by 10- and 13-year-old, who have each been learning to fly private aircraft since they were just 8, take to the sky. This free, national program, Young Eagles, has been an intical part of our lives for 5 years now and this is the first chance I've had to go watch! (I did go to a parade a meet several of the involved adults, about a year after my stokes, and massively spun out at the sight of slow hot air balloons ascending off the ground.)

Rather amazing! And even with my intense fear of heights (thank you strokes), my stomach only felt like bottoming out on me once all morning, when another young student took off on an overly steep, swift climb, not even when either of our kids took the stick! Do I have any desire to go up in the air myself? Um NO!!! But I'm glad it gives them such joy! :)

Ruth's favorite pilot, Mr. Wendle, took her up this month and reports that she can take off, land and maneuver the whole flight without any help and is ready to take a licensing test as early as the law allows, when she turns 14! Our l0-year-old is fast learning as well, controlling the stick for much of his in-air time and handling about half of the turns without help.

If you know me well, you likely know one of my very favorite foods on the planet is sushi (closely followed by crab, shrimp, clams and just about any seafood). 

A fun gift of the strokes is that probably at least 3 out of 4 times I have eaten seafood since the strokes, I have thrown up. This almost seems to be a new food allergy, however, it is not 100% consistent, so it is kind of a "take your chances" proposition. The other day I made crab legs here at home. In June I had cooked lobster. (Both thanks to my door-to-door meet purchase fiasco, not typical Saake homecooked fare!) I noticed I didn't throw up either time at home, didn't even get nauseated, but nearly ALWAYS get sick eating seafood at a restaurant.

It has been repeatedly speculated that I make myself sick by overeating (seafood specifically, as other meals have not typically made me sick) when I eat out, a theory I have rejected since the first seafood restaurant trip post stroke. Another idea was that perhaps there was something in seasoning, like MSG, that restaurants use on their seafood but I do not use at home. (I still consider this to be possibly a small part of the story, as MSG has caused wicked results for me for nearly 30 years.)

Depression often comes along with brain injury, and while this sign is true enough as written,
I personally would like it even more if in encompassed all brain break downs, not just one issue!
This week I felt very validated though. With family visiting, we went out to eat at my favorite sushi restaurant (where I haven't been since throwing up there on our anniversary last August). I called ahead, explained my brain injury and processing issues, and made arrangement to have the music turned way low when we got there. I also too Zofran (anti-nausea prescription) a couple hours before we went and again after the meal.

Guess what? I didn't throw up!!! (I did end up unintentionally consuming some wheat that I now know how to avoid next time, and had a hefty headache by evening, but that is a totally different issue.) 

Than you SushiPierMidtown!
It was an all-you-can-eat meal, so that rather blows the overeating theory out of the water! :) I still think there are likely unique properties to seafood that my body doesn't process as it used to, a "semi-allergy," if you will, but taking out several neuro factors made a huge difference in the outcome of this meal. I am going to try the pre-medicating trick again in the future for events like the ladies' luncheons too! :)

I've mentioned the problematic joints of my more-stroked left leg. Just this week, my right wrist has been unusually angry and painful too. It feel much like the initial pain when Fibromyalgia symptoms first began to manifest in my wrists about 28 years ago. I guess roving Fibro pain isn't out of the question as one possibility. I tend to more believe I have strained or sprained or simply overused that joint. I still type with only one hand (though this lengthy blog post has not been overly painful) and text with family (that movement does hurt) and have been doing a lot of extra lifting of my body with the right arm (I have had to all along, but more so again now to compensate for the sore hip on the other side) and am finding even simple acts like closing the dryer door are making me wince. I'm trying to convince my left arm to literally take more share of the load, but so far, it isn't cooperating with this request. Since my legs do little in the way of helping me get situated into bed each night and the left arm likes to collapse under my body's weight, I have taken to trying to pull my body into sleep position by either putting pressure through the back of my hand (thing of normally pulling of body weight with the palm of your hand against a bed or table, now flip it over and do the same move with the back of your hand) or leaning on my right elbow. I'm only 43. I expected joints to serve me well at least for another decade or two!

I realize my posts frequently containing missing letters or other typos. I do try to catch and correct as many as I can before I publish, but I have a policy that once a post goes live on this blog, I will not go back and edit. I use this as a barometer of improvement in skills. The OCD part of me want to cringe when I go back and read old posts, but the documenting part of me is glad to have a clear record of skill progression. ;)

I know I've mentioned it here before, but I was reflecting on my odd form of Aphasia this weekI used to be rather fluent in Sign before the stroke (2 years as high school foreign language, all the way through the most advanced deaf ed course in college). Stroke took most of that from me. I can still Sign to others with 70-90% accuracy, just can only read less than 10% of what is Signed to me. Rather shocking discovery just a year and a half ago!. Still think the language is beautiful! 

It was barely starting to snow at 6:30 this morning. By 7:30, this was our back yard!

I have often likened our time on this earth, in light of eternity, to a baby's gestational period within the womb, critical to development, but such a fraction of the total life so as not to even be remembered in the coming years. The idea that "birth looks like death from the other side" goes hand-in-hand with that line of thought.
(Quote from a book I know nothing about, TheHiddenSouth.)