"All their life in this world and all their adventures in Narnia had only been the cover and the title page: now at last they were beginning Chapter One of the Great Story which no one on earth has read: which goes on for ever: in which every chapter is better than the one before." - C.S. Lewis, The Last Battle
Update: The In Darkness Sing blog at JenniferSaake.com is experiencing prolonged technical issues, so I'm temporarily posting back here on my old Stroke of Grace blog.
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. Jenni 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 but wheelchair-bound and needing 24-hour care. At 5 years, 7 months God showed how He was writing her story from the beginning.
Monday, November 16, 2015
Here's a quote I want to remember for my book:
Sunday, November 15, 2015
It started with a 20-minute battle with my hair. I got it in really well at the beginning, but it wasn't in the correct spot on my head, so I took it down and tried a re-do, but my hands were done working by then, so I tried a number of re-dos before frustration led to tears (I still can't really cry, but I did get tears in my eyes) and giving up to go to a very simple default. One mostly working hand, and one mostly not working hand, gets life interesting at times!
|My walker, Bubbles.|
Service started out well. We attend a church with two services, a "traditional" one with old hymns and mostly elderly attendees, and a "contemporary" later service with louder, faster praise music accompanied with electric drums and guitars, populated mostly by our peers. We actually go to the early service specifically to avoid the neuro stimulation of second service (and our kids are some of the only young in attendance, so are blessed with many "grandparents").
Today, however, we had special music at offertory that was beautiful, but LOUD and accompanied by drums. I was digging for my ear plugs (though I am mostly deaf in my left ear, what I do hear is not easily processed by my brain, thus this is the ear I must plug against loud noises), but even so, was in physical pain at some of the crescendo points. Within moments, I had to excuse myself to the restroom. I was sick all through service, then we came home without staying for Sunday School as usual.
I slept for 4 hours! I woke up about each hour. After hour one, I had a headache added to nausea and realized, while all the vomiting, light sensitivity and sound sensitivity were like severe migraine symptoms, the headache itself was the result of sleeping with my entire body so tightly clenched into a tight fetal position. I was, however, finally able to move my head enough to look at the clock without "spinning out". By hour two nausea was still pretty strong but my muscles were starting to relax and be abler to spread out a little, even roll onto one side. By hour 3, headache and nausea were both significantly improving, muscles were loose enough to fully uncurl and stretch out in bed, even roll over onto my tummy, but I felt as done in, fatigued, limp, as a wet dishrag. After the 4th hour of sleep, nausea was down enough I felt I could risk moving again, so I got up and sat in my recliner for the next couple of hours. I guess I was quite pale when I woke up but reclaimed more color over that next couple of hours sitting upright.
I never managed any lunch, so after keeping down two glasses of chamomile tea and a dose of Zofran (nausea med), we went out for a light dinner. I'm now home, in bed for the night, before 7PM.
As I was throwing up, I was thinking about how if I were to just give up and stay home, I would never have days like this, never encounter latex, loud sounds or other triggers beyond my control, Truly I have (now) many more good days than really rough, like the first year or two! (No wonder I was so depressed when this was daily expectation!) So when days like this hit, they are evidence that I haven't given up, keep trying, keep risking, an out living.
Thursday, November 5, 2015
I'm working my way through a month of photo thankfulness posts. Today I actually want to share a video pertaining to vocal progress in stroke recovery (if it takes a moment to load, you may need to refresh/reload your page or go read the rest of this post then scroll back up here to watch or catch it on YouTube) Feel free to compare this to my 18 month singing video too. (And here are some of the mouth/jaw/tongue exercises I did to help rebuild some of this!)
My voice is something I really grieved after the strokes. Yes, I could "talk" within a short time after the intubation tube was removed (about 4 or 5 days after initial events, I think), though my husband says that there was not much reason to the words I initially tried to string together, much frustration involved on both sides and a fair amount of guess work involved in deriving meaning from my "sentences". (Remember my mom "sitting on lions"? I'm thinking those first days were maybe a bit like that.)
The first time I remember realizing anything was wrong with my voice, was in the rehab hospital, after all 6 strokes and two surgeries, maybe a couple of weeks before coming home. I was talking on the phone (by then I think I was able to communicate fairly smoothly) to my family, saying evening prayers with our kids, then singing the Bible verse we always sing together before they head to bed. Not only did my voice hesitate over many of the words, but I realized how flat and unmovable my range, tone and inflections were.
I don't know if my husband actually muted the phone for a moment so they didn't have to hear my struggle (he says he did not) or if it was just my hearing struggle and new dis-ease on the telephone, but I could not hear my family at all for the length of that song and my heart BROKE in that instant to realize yet another loss! I had quite a nice voice before stroke, had always sung in choirs since childhood, even in vocal competitions by high school, and now my voice had deserted me. (We later learned, though throat scoping and imaging, that my left vocal chord was paralyzed, and by the time I was scoped, significantly atrophied as well, and the right side weekend.)
Added to all of this, two thing music-related that I also grieved loss, were related to my hands. I used to be a "first-chair" floutist (flute player). I haven't even tried my flute in over a year now, but last I tried I had neither the breath/lung control to make or sustain much sound, nor the left hand dexterity to properly play the notes. (Originally I did not even have the left hand/arm strength to hold the instrument up into position, so just being unable to properly control keys was big progress!)
My therapists wanted me to keep trying to Sign and sing together, those first few years, as part of brain training as well as speech and physical therapy, but the disjointed effort was highly discouraging. To realize, last Christmas, that while I still retain ability to make the Signs for a fairly large vocabulary, I have lost the ability to read more than a sparse handful of words from this beautiful language, to understand much of anything "said" to me (thank you weird aphasia symptom!) was another horrid discovery!
While my voice is still no where near where I want it to be again, I try to "sing" here at home, pretty much every day. I think I have regained the vocal strength and range that I have because of God's grace, first and foremost, but also because I keep pushing the envelope, fighting to reclaim what was lost in this area.
Recently, a friend (who I have only known this year, so never pre-stroke nor early recovery) told me her daughter loved to hear me talk, could "listen to me all day." I was so startled! When I expressed my surprise, she said, "You have got to be kidding. I feel the same way my daughter does!" Apparently my voice is interesting and has the qualities of a great verbal story teller now. Who knew? Actually, even though I didn't realize how badly I needed that encouragement until after my heart had already grasp at the blessing, God knew that was exactly what I needed to hear after these years of loathing my voice!!! They like how I articulate each sound, and to this I give credit and thanks to both God and to my ST (speech therapist), Rachel - those hours and exercises apparently paid off! :D (But please don't ask me to talk after chewing ice nor eating ice cream, as my mouth still grows much to numb to even hope to speak understandably!!)
Let my also add a joyful P.S. that Mom "graduated" from physical therapy yesterday, got a certificate and everything! (I never "graduated" but was simply "released" on the promise that I continue specific physical activities, on a consistent basis, for the rest of my life!) We will both continue to attend water aerobics twice a week. She is currently petitioning her insurance to try to convince them to continue paying her monthly gym membership fee that they are planning to drop at the end of next month.