Nevers
"Occasionally, weep deeply over the life you hoped would be. Grieve the losses. Then wash your face. Trust God. And embrace the life you have." - John Piper
Though I talk much about my strokes online, in my day-to-day life, though the daily impact is significant, I talk about my strokes very little. It is obvious that I limp by watching me walk with my cane. People who spend large amounts of time with me notice plenty of other telltale signs that "something happened", But I am no longer immediately identifiable as severely disabled to many people I interact with.
In fact, over this summer, I shocked both our pastor and his wife (we have had personal interaction with them at least once a week for over a year) and, last month, another couple from our church (also frequent interaction, including kids at same school and a couple dinners together, one evening in a larger group where we had a chance to talk for an hour, and another evening where it was just the four of us out for a couple hours) when we told them I was a stroke survivor. How crazy to have gone from having brain injury instantly recognizable by severe physical markers like being wheelchair-bound with a dysfunction left side (leg, arm, hand, eye, ear...), to being able to visibly, and even socially, pass off as relatively "normal"!
While I don't typically leave the house "unsupervised" more than a few times a month, this past week has seen me out on my own twice. I was dropped of for a dentist appointment on Monday afternoon, then took the special needs transport service to my son's school *yesterday. Due to my mobility issue, hearing loss, memory function, and limited dexterity / fine motor skills, within those two outings, I retold my stroke story five times.
*Thursday. Since my thinking and organizing skills are slow, and since I type with only one hand, it typically takes me several days to plan and write up each blog post, I started planning the details of this post Thursday afternoon, typing on Friday, and I will post it as soon as I finish typing, likely Saturday evening or Sunday afternoon.
I'm more than happy to answer questions. I understand how unique it is that a young mom had strokes at all, not to mention the circumstances that brought them about, the severity of disability level, and the amazing fact that I'm still alive a decade later from an accident that should have killed me, twice over, that very day. But five lengthy conversations in two outings, all within just three days, was emotionally exhausting!
As I told my husband when I went to a mom's event for my son's school at the beginning of the year, some days I just wish I wasn't me for at least a day, that I could set aside the physical and emotional baggage of stroke for a little while. I had panicky "first day of school" jitters preparing to go to that event and really wanted to only have to deal with normal "will the other kids like me?" fears rather than having to account for all my stroke issues that would need to be compensated for as I went alone.
Nearly a decade in, here is a list of a few things I have accepted I will likely never recover:
- The ability to walk in any kind of "heels" including shoes that are only slightly wedged.
My balance just isn't there. Plus there is still enough paralysis in my stroked foot / ankle / leg that only very select styles of shoes even stay on my left foot as I walk.
- Running. Jumping. Standing on Tiptoe.
Thinking of feet, there are actually several "Nevers". Yes, after months of very intensive, daily training, I did, very briefly, technically achieve all three of these goals, a few years after my strokes. But the physical pain and falling scares just weren't worth the daily training required to try to maintain these particular skill sets. As soon as I stopped practicing for several hours per day, I quickly lost all three abilities. I have better ways to invest my time and choose to let these go!
- Driving.
For years I held out hope on this one. Initially I thought it might take months to re-learn. Then I figured a few years would be a realistic expectation. "Maybe by 5 years? Surly recovery will be far enough progressed that I'll be driving again by 8 years!"
Alas. here we are at my 10-year month and I would still be unsafe behind the wheel! I know the rules of the road, but I consistently have painfully slow reflexes and reasoning skill, and make major emotional over-reactions to even common stimuli. No, I seriously don't think I'll be a safe driver any year soon.
An adult tricycle is my dream someday.(Yes, several years ago I did buy a used one in Reno, but never was able to ride it. It did not make the move with us, so would need another if this ever happens.)
- Paying bills.
Before the strokes I did 99% of our family's financial management. Now I struggle to even sort the daily mail (though it is primarily junk mail) and often fall six months behind in opening the personal stuff. It is thanks to Rick's patience, persistence, online financial savvy, and organization skills, that the bills now get paid at all, and on time even!
- Full time employment.
While I'm not wanting to be a secretary or work in banking, I wish I could work in a school setting. I love people, kids especially. As I will explain in more detail in the next section, I'm getting a taste of this again, but finding regular employment to fall into the highly unlikely category for my future.
No, I did not receive any kind of financial disability assistance after my strokes. Because I was a full-time mom, homeschooling our children for the ten years prior to my injury, I was not out in the mainstream workforce during those years, thus was not recently paying into the social security system. (I did not know you "time out" from receiving benefits if you only partially have your "quarters" in and haven't been actively paying in to the system over the past 10 years.)
My injuring chiropractor carried no insurance and quickly left the country, so no financial settlement there either. While were were blessed with exceptional health insurance at the time of my accident, the financial burden of this past decade has fallen solely to my husband. I am beyond blessed by God's abundant provision through Rick, but it would offer us both some assurance as we age (I'm 49, Rick's early 50s), and take a measure of stress of Rick, if my body would allow me to also contribute toward our financial future.
Lest you think the post is all about what I cannot do, or sounds like I'm giving up, consider these highlights of many "Nevers" I have accomplished that the doctors predicticted could not happen:
- I'm alive!
While I was initially on full life support, I have been breathing on my own since day 5 or 6,
relearned chewing and swallowing within 2 months (though I still choke on my own spit several times each day),
sitting,
standing,
walking (now mostly unaided around home where I can "pinball" bounce off my familiar walls and furniture, and typically only needing my cane or walker in crowds),
have regained large motor function of left arm and leg,
the use of my left eye (and now only have doubled vision if I look beyond my left shoulder or am very tired),
and am continually challenging my left ear to regain as much function as possible.
- While I am slow and have to take copious amounts of notes (that I sometimes can't figure out by the next day, so have to research again), I was able to research and fight for two of our kids through significant, lengthy medical battles over the past 4 years. (Their health needs seem fully unrelated to one another, or to the cause of my strokes. We just are a wonky medical family!)
The child who was seen in 7 different hospitals in 3 states in 2018 and 2019, is now living independently and thriving as a young adult. We are so very thankful for God's answers! Our heartfelt thanks to all who prayed us through this journey.
I maintain that fighting for this child, navigating medical and educational options, filling out so many forms of all kinds (as I mentioned above, this is exceedingly difficult!), speding hour and hours on phone calls (another blessing, as I could not easily figure out the telephone for years), and even more time researching conditions that left dozens of doctors mystified, was the best "therapy" I could have ever done! I would have never attempted such tasks were it not for love-feed desperate necessity! Once the crisis was past, the toll of months of elevated adrenaline was profound for me, however significant growth in several physical and mental areas was evident as well.
The other adult child is going on 4 years of being primarily housebound, bedbound over much of the last two years. His doorway is directly next to his bathroom and across the hall from the laundry room, so everything he needs is within about 5 steps of his bed! He cares for his own toiletry needs, often manages his own laundry, can make it the 10-12 steps down the hall to the kitchen table once or twice a day, most days, and typically makes the 24-ish steps to the kitchen at least once a day. On really great days, he puts on a sunhat and temperature-regulating vest, then takes his cane on brief walks around our neighborhood. In good seasons, he drives to the grocery store (1 mile away) a time or three per month. My accomplishment here is that I am helping him navigate doctors, manage medications, and caring for at least 50% of his meal needs. It is heartbreaking to watch his struggles, but he encourages me with his gentle presence in our home and amazing attitude amid adversity.
- Researching school options for youngest (high schooler) has been physically and mentally draining, but emotionally such a joy. Arizona has tons of options.
That reminds me, I have more STO (if you are an Arizona state tax payer, you may know what that is) paperwork to finish!
...But one thing I do: forgetting what lies behind and straining forward to what lies ahead, I press on toward the prize of the upward call of God in Christ Jesus. - Philippians 3:13
(The context of the above verse concerns my faith and has nothing to do with strokes. While it was written fully with a spiritual focus, so many times it describes what I want my physical and emotional views to be as well. I include it here because this post is one of those times that, in order to see the progress physically, I need to to submit my thoughts to Christ first.)
As I think of them, I'll likely share more "Nevers" (both those I concede and those God has proven false in my case) throughout the month, as I plan to post multiple aspects on my stroke story in this, my decade mark "re-birthday" (stroke-a-versary) month. (The much shorter Part One of this series is located here.) In closing, please allow me to tell you about some areas where I'm still reaching toward growth:
- Swimming
My left side is still very weak, especially my core. The left muscles are prone to spasming from the daily activities of living (sitting, standing, basic reaching, etc.). Unless I keep up with therapy on a near daily basis, I end up down in bed on muscle relaxant about once a month or every six weeks. Insurance stopped paying for my daily stroke maintenance therapy YEARS ago. (Although I get enough injuries that doctors regularly offer to send me back for specific interventions, referrals which I usually do not accept because 10-years of off-and-on therapies have loaded me with an arsenal of specific exercises for just about every part of the body, so I can refer back to my files and revisit specific exercises as needed.) But if I get in the pool at least 4-5 times a week, I only spasm badly enough to need muscle relaxants once or twice a year. Thankfully Arizona weather provides swimmable temperatures for more than half of each year.
- Hair. Makeup. Clothing.
I will continue to push on in more effectively learning these skills.
Right now, most compliments come from times I accidently create an un-repeatable hairstyle while trying to do something else with my hair.
Without my daughter at home to assist me, I'm rather hopeless concerning makeup.
My clothing all draws attention to my wildly protruding "looks-pregnant" belly I must thrust out in order to maintain balance. (Seriously my belly measures a full two clothing sizes larger than the the rest of my body). And items are simply not designed to grace my post-stroke figure that continually packs on more and more pounds no matter how careful I try to be with food choices. (How did I gain weight during a recent three-week span of being too sick to eat more than a few hundred calories per day?)
I still feel fairly inept in these departments. With one hand functioning about 90-95% correctly, and little fine motor skill in the other at all, I just feel clumsy and "unkept" when it comes to personal care. *sigh* However, I will not give up and will continue attempting to do my very best with what I've got. On the days I look in the mirror and literally shrug "Oh well," I try to remind myself, "Not bad for 'should be dead!'"
As my pastor's wife put it, attempting to better my body is wonderful in as far as it betters my service to Jesus. (For example, she had to undergo surgery for a hip replacement last year, and went from being almost unable to walk, to now having the ability to run around wherever she needs to be.) Otherwise, this body is only temporary anyway, so why bother dumping time, energy, or money into something that is designed to quickly pass away. Yes, she always looks beautiful and well-poised, so she is not advocating hygienic sloth, but the point that I need to keep my focus on why God has placed me here, rather than sidelining myself with vanity, is well taken.
- Medical.
Over the past ten years, I have experienced a progressing series of "epiphanies"(in the metaphorical sense) that I am not held captive by the words spoken, predictions made, nor instructions and tests ordered, by doctors.
Several months ago I sought medical advice for the overall energy decline I've been fighting over this past year. I was referred to multiple specialists and about a dozen invasive and costly tests were ordered. I was literally going to be visiting new doctors and undergoing unpleasant testing about three times a week for over a month straight.
I decided what tests (a couple of kinds of cancer screens, some lab work, a brain MRI) made the most sense given my needs, and I called and canceled a bunch of the other testing and all but two specialist appointments. I've decided what concerns me enough to continue pursuing and what I'm currently willing to live with and let go of trying to chase down answers.
Bottom line, I haven't found answers nor help (yet - one more round of bloodwork to go, next month), but I've achieved peace of mind by ruling out the most serious long-term health threats. I've retaken a measure of feeling competent and confident in my decisions concerning my own body, after having had so many decisions dictated for me.
As one of the two specialist I saw put it, "If you came to me with your health history, and did not also present with this wild list of complications and concerns, I would be questioning the validity of your story! For all your body has endured, I'm honestly astounded that you are doing as well as you are." She was my biggest supporter when I told her I wanted to cancel the four invasive tests that were scheduled by her office.
- Home management.
Am I Martha Stewart? Not even close!
But can I fight to keep at least a room or two of our house looking presentable at any give time? Yup.
Right now our living room and part of the kitchen are looking loved. Bathrooms could use a little TLC, but overall are in fairly good shape.
I've got a schedule of washing and drying laundry on either Monday or Tuesday, and usually manage to get it all put away by about Friday or Saturday. (It helps greatly that the kids all do their own laundry, so I'm only responsible for two people and household stuff like kitchen towels.)
I also am up to consistently preparing dinner 4-5 nights a week, as well as making lunch (usually warming leftovers, as making a sandwich still is profoundly difficult: typically resulting in haphazardly stacked ingredients, squished bread, and at least 25 minutes of prep time per sandwich) about twice per week.
- Brain Training.
I've always been a "word nerd" since long before strokes and still enjoy daily "word of the day" dictionary.com emails. I'm not at all wanting to be pretentious, but enjoy using creative language for the pure sake of an even-extending vocabulary. My family sometimes gets a good giggle at my speech choices, and occasionally has to ask for definition or clarification. This week I've had to define both propriety (used in a context where they hadn't heard it before) and the word our daughter dubbed as "fun", vivacious. I don't try to drum up expressive words, I'm just a fascinated word / definition collector (a trait I inherited from my mom), so theses naturally roll off my tongue in everyday conversation.
A couple years after the strokes I started playing " Candy Crush" on my phone. I've enjoyed the original game (played the first several hundred levels several times each), but love the "soda" and "jelly" versions best. (Yes, I think I've tried them all, like "friends" too, but like these two the most.) I play several games per week, often while sitting in medical waiting rooms, or most nights before bed. On Soda I'm level 580, and on my most-played platform, Jelly, I'm now at level 1,882 (and have gotten first and second place in a few Royal Championships).
From there, I've added many other brain games, trying to sharpen my math, observation, scanning, reaction time, pattern recognition and prediction, reaction speed, and other cognitive and fine motor skills. I do various Brick and Balls kinds of games, and usually play at least one digital game of Differences, Parking Jam, and / or Sudoku each evening. With Sudoku, I was initially stumped by the "easy" level, worked my way up to the "medium" level (took me about 45 minutes and 4-6 mistakes, in order to solve a puzzle a year ago, now it only takes me between 20-35, with an average of 2 mistakes, to solve this level). This week I started the "hard" levels - last night's game took 56 minutes, but I solved it with only 4 mistakes along the way. Not bad for someone who did not know 2+2=4 in November, 2011!
The brain training I'm most excited about though is long-passage Scripture memory. I'll be posting an entire blog entry about this one topic soon (and linking it here), but if you want to know details now, the long version of the story is found at https://www.facebook.com/groups/358795264505214/posts/1448365538881509 and my comment replies at https://www.youtube.com/watch?v=6sIJFKmh9C8&lc=UgzmnSwDYo96zUlji_54AaABAg and https://www.youtube.com/watch?v=t2VH-d8OuSM&lc=Ugz7iLn2jfRadAIM1pF4AaABAg . In brief, on December 10, 2020, I "happened" across Susan Heck's "A Call to Scripture Memory" at https://www.youtube.com/watch?v=WVvPtTCni1E&t=14s and I was captured by two ideas:
1. Scripture memory is key to growing into a "sweet old lady" someday, by the renewing of my mind, that the overflow of my heart will be sweet to the soul rather than bitter, when I loose control of my thoughts as I age.
2. Bible memory is the best "brain training" out there!
- Volunteering,
I love children! I've worked in various classroom settings since I was 14. I was a kindergarten teacher's classroom aide, taught preschool Sunday School and VBS for about three years, and had my first paying regular job in a nursery, as a high schooler. In addition to homeschooling our own three kids and teaching several homeschool co-op classes over about ten years, I tutored many kids during the early years of our marriage. The last six months we lived in Reno, I was on campus every day my high schooler was (attendance averaged 3-4 days per week) due to severity of our child's medical needs, and ended up being hired by the school district as a special needs personal aide.
In mid August of this year, I started going into the elementary side of my youngest son's high school and volunteering wherever they could use me (often dropping mail into boxes, using the paper cutter, making photocopies, or assisting in classrooms). My original plan was to be on campus all day, every Thursday. My dream is to eventually apply for at least a part time position there.
My body (no longer driven by the heightened adrenaline that kept me on campus our last six months in Nevada), so far, is not in agreement with my schedule plan. I've only made it to campus four out of the past nine Thursdays, and only managed a full day on two of those weeks. I am hopeful that as my body adjusts to the schedule, and I'll not only grow more reliably consistent, but that I can even expand my planned hours there.
- Book
My last published book was in May, 2005, just weeks after learning I was expecting our now-almost-16-year-old. Obviously I've had a few diverting circumstances in my life since then, but I've nearly always had at least one "next book" idea cooking at any given time since then. I was going to write a pregnancy- / parenthood-after infertility / miscarriage book, do a pregnancy devotional journal, develop homeschooling resources, put together a prayer planning journal, a book about the fruit of the Spirit, encouragement for living with chronic illness, biographies on the lives of Bible heroes like Paul and David, some novels based on more obscure Biblical characters...
Within the first ten days after my strokes, I announced that "this is going in my next book," a work I mentally titled "Stroke of Grace". My family, not believing I could live out the week, graciously humored me by supporting my dream.
Through all our family medical trauma of 2018/19, I jotted down Bible verse references and scribbled additional book notes, not even having a specific project tied to my goals. Then the sudden move two years back. and all plans were again tabled.
After moving down here, I wanted to write something fun and light. Maybe humor? A cookbook? Then again started leaning toward a devotional work of some kind. If only I had the organizational skills to make something out of these years and stacks of scattered scraps of paper and ideas!
Enter neighbor and co-author Carolyn, with her writing and organizational skill-sets, along with life-changing discoveries about ways I have been manipulated and deceived by some churches and parachurch organization. Along with Carolyn's own deception story, a firm book idea was not only born, but is actually taking clear shape and moving forward with significant progress. I've stopped trying to make guesses about what month or year we will actually finish this manuscript (Have I mentioned that I am a SLOW researcher and writer?), but Carolyn, who herself works full time, is being incredibly patient with me through this process. If you wish to follow along with subject matter and future publication updates, please join us at https://www.facebook.com/DeceptionUnmasked .
All Scripture on this post is quoted from the English Standard Version (ESV) as posted at Bible Gateway.
My books:
Read more about infertility, miscarriage, adoption loss, and my first book, Hannah's Hope (written pre-stroke), at JenniferSaake.blogspot.com/2021/04/hannahs.html
Read about our current book project I am co-authoring with Carolyn Howell, author of Foodborne Dementia, about deception in the church, at JenniferSaake.blogspot.com/2021/04/DeceptionUnmasked.html
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