If you are looking for my regular monthly progress report, it is here. Today I'm doing something a little different...
It seems fitting that, on my 2nd re-birthday, I am posting my 200th entry to this blog today! As I said earlier this month, "On one hand it [second stroke-a-versary] just doesn't seem possible already. On the other, "before" seems like forever ago, a whole other lifetime ago." Here are my current thoughts on time (big contrast from how I used to view time!) and why I now call this date my re-birthday. Wow, what a very long way I have come even since this date, last year!
Deep breath. OK, I've talked this over with Rick, with my mom, with my counselor, with Kendra, and I think I am finally ready to take the plunge so that this landmark of devastation in our lives holds some redemptive meaning in how it might impact other's (yours?) lives today...
I LOVE this quote I found on Facebook!
If you have visited here much, you likely already have read what happened when I stroked, the factual account of the medical events that transpired in the wake of the strokes and hopefully even the spiritual realities that transpired that day. But very few people have been privy to the back story here, what actually led up to the moment of stoke in the first place.
While I'm nervous to share these details, I think it will bring much relief to finally tell the rest of the story now. This is a LONG post I have been working on for several weeks. It probably really should be posted in about 8 smaller parts (I've labeled them and broken them up into those smaller posts, linked with labels, in case you want to read in bites), but I felt like it really needed to be addressed all at once. Much of this is in direct answer to the most frequently asked questions I tend to be asked.
What you will find:
1 Basics and Why I've Not Shared Before
2 Story Details
3 Medical Expectations
4 Manipulation Mechanics
7 Reflections on Forgiveness
8 My Victory Declaration
1. What Happened and Why I've Been Quiet About It
The story is pretty simple, really, but I was legally advised to be cautious how and where I said anything, and not tell it via social media at all for that first year, and it led to the removal of over 90% of my Facebook friends (never intending to damage actual friendships, but striving to prevent innocent chatter on my page from causing any legal liability) and the creation of my public Stroke Of Grace Facebook page (Have you joined?) where I could control the content of the page and keep everyone as informed as I was permitted. I have been hesitant to share the details even without a lawsuit any longer pending. As you can imagine, that facet of the story, alone, carried its own set of emotional baggage! In a nutshell, I went to a chiropractor, here in Reno, Nevada, where my artery was severed and I had two large bleed-outs into my brain stem and cerebellum, right there on the table. If you want more specifics, below are most of the details.
I had hinted at the situation a few times before being asked to refrain from further public comment, but this is the first time since just coming home from the hospital that I have been ready to put pretty much the full story up on my blog. (Kendra, I cried when I remembered you were the first to comment when you saw the original post about my strokes, faithful-since-the-start-friend, not having a clue what was coming in your own world! Did I ever tell you I just figured out how to listen to telephone messages and had tried to return your phone call, I think the very day you stroked?)
That week I had been fighting a migraine headache that Western medicine could not bring under control, especially at the base of my skull, on the LEFT (this is IMPORTANT to know) side of my neck. (While I primarily have left-sided injury to my body now, this represents RIGHT side brain damage, as the hemispheres of the brain control the opposite sides of the body, so any left side pre-stroke head/neck pain was NOT an indication of imminent right side arterial concern.) I had been to the emergency room, given medical tests and scans (showing absolutely NO sign of aneurysm nor structural concern in either my brain nor arteries), then eventually sent home because there was nothing left for the hospital to try.
When the headache continued, I decided to visit a chiropractor, since I regularly visited one in high school. I had not stepped into a chiropractic office in over twenty years (so no, a frequently asked question, I had never met this doctor before), but I had no hesitation to visit one now because I hoped alternative medicine might be able to address my pain concerns.
So I called one chiropractor (I knew and trusted) and that office didn't take my new insurance, but thrilled as I was to have any chiropractic care available to me under my new insurance plan (something that I had desired for our entire marriage and never had before), I picked up the phone and made a second call, one that was nearly to become fatal.
Yes, a practice near my house not only took my insurance, but had an opening later that same morning. I didn't even bother getting out of my pajamas before my mom raced me over to take that available spot. The office was sparse, my impression is that it was rather dark (perhaps that is only my impression, as dark events were about to unfold, since I know that one entire wall of that strip-mall location was glass, so I would think the office was actually fairly bright), and, as my mom later stated, maybe we should have realized when I was the only patient in the entire office and the doctor himself greeted us at the reception desk because he had no staff, that something was not quite right.
He seemed to be a nice enough guy, did spend a few minutes verbally going over a bit of my medical history with me, even making personal comments about his own family before he ushered me back to an exam room (without x-rays nor any other form of examination) to begin an adjustment of my neck.
That sore left side, he worked on first. I was rather tense in anticipation of releasing control of my neck to another human being, so his very last words to me before beginning the procedure were, "Just relax. Trust me!" (To this day, my counselor and I continue to address the trust issues I have developed after those words!)
At some point in the process, I believe it was just before he attempted the first adjustment on the left, or perhaps it was during his multiple attempts on the right, I even recall his comment that I was quite "hypermobile." (Typically called excessively flexible or "double jointedness" - we have since learned, from multiple doctors and therapist, that one of the first things they learned was that you are never supposed to manipulate nor try to adjust a hypermobile joint!)
After several attempts, I heard and felt a large "pop" on that RIGHT side and remember immediately telling him something like, "I am SO DIZZY!" to the point where I dug my hands into the edges of that narrow little table because it felt like I was literally going to fall right off. (Interestingly, in the wake of the strokes, I have developed an extreme fear of heights, specifically of falling, that I think links back to this very moment, along with the cerebral (contain balance center of the brain) damage sustained via one of these first two, massive strokes.)
He started to leave the exam room to get something from across the hall and laughed back over his shoulder something like, "Don't fall off my table!" About that time my left leg jumped then fell. My mom, thinking I was playing around in response to his joke, lifted it back onto the table.
Before she even released my leg, one arm after the other also involuntarily convulsed into the air as I began what looked to be a grand mall seizure (we later learned the proper name for the event was a psudo-seizure, as it looked like a classic seizure but it was directly triggered by the brain bleeds and I had no seizure history and a subsequent EEG revealed a total absence of any epileptic activity) right there on the table.
The doctor rushed back into the room, grabbed my face between his hands and shouted, "Look at me!" By that time the strokes must have already been impacting my vision, for, try as I might, I could see nothing but a grey blur where his face should have been. I tried to respond, "I can't look at you," only I heard a very gurgled, slow and slurred version of my own voice trying to respond with something like, "Aaaa ccaaaa ooo aaaa ooooh." At that moment I had no idea what was happening and my emotional centers of my brain must also have taken a beating already, because I wondered at the strangeness of my own movements and voice and actually found the total lack of any control to be both curious and rather humorous. Obviously, I had no notion of what was actually transpiring!
3. What I Remember Next And What Was Expected
Apparently, Rick, both parents, my in-laws, my kids and my pastor all met me at the hospital that first day, but by the time I was aware enough to remember anything, several days had already passed and my in-laws and the kids were already back down in Fallon for the rest of the school year. I have no other memories from my fist several days in ICU (on ventilator and feeding tube down my nose, having to be strapped down to my bed with restraint straps so I didn't pull out my IV or other tubes - not sad I don't remember these at all!), and have very few, very vague, sketchy memories of my first 6 days in ICU at all.
I do remember being shocked and thinking she must be mistaken when my mom finally got through to me that I had a stroke (well, strokes actually, but that took longer for me to comprehend). At that time I thought strokes only happened to "old people" and that she must be mistaken since I was in my 30s! I have been told that several people had been explaining this news to me, over and over again, for days, but I just never comprehended nor remembered before the time I finally remember being so shocked. From my earliest memories, the medical explanation for my strokes has always been my chiropractic adjustment and I had no other risk factors.
My doctors did not expect me to survive at all (and this just after the first two strokes I experienced that morning at the chiropractic office). When I defied their prediction there, I certainly was never going to walk again (said almost all, save one resident who offered my husband a glimmer of hope that it would take at least two years, but there might be some possibility at some measure of relearning to walk again - so it is good to know that one medical "expert" thought there might be a possibility to, sometime after today, maybe do what I've been already doing (with a cane) for well over a year now). At least twice in that second week, out of ICU and down in the main neurology floor, my husband heatedly went to combat for me when doctors told him there was no chance for any quality of life nor rehabilitation, so he might as well give up the notion for a therapy hospital for me and send me to a long-term nursing facility (nursing home) instead, where I would live out my days in a bed, hooked up to machines.
How could this happen and how rarely does it happen? Well, according to many chiropractic groups, it simply does not happen at all, is only casually associated (why it is so important to note the headache that sent me to the chiropractor was on the opposite side of my head than the severed artery, because no one can then say my headache was a precursor to a stroke that was about to happen anyway, as the artery that was severed was not even on the side that was painful enough to send me in), or is so incredibly rare that adjustment is still worth the risk (the most extreme estimates I've read to persuade you of low likelihood sight between 1 in 1-5 million odds). This video arrogantly explains an adjustment from the chiropractic perspective (assuring you why it is so safe and telling you all the reasons why it is the patient's fault and not possibly the manipulation that causes a stroke) and goes so far as to say any link between an adjustment of the neck and stroke is just another "urban legend." His description of all that an adjustment should ever entail is not consistent with what I remember experiencing on my right side. :(
According to the Chiropractic Stroke Awareness Group web page, "1-to-3 people each working day in the United States have a stroke caused by chiropractic, or 260-to-780 people each year, or 2,600-to-7,800 per decade." So no, it is not terribly common, but not surprisingly uncommon either, literally an every day occurrence (some reading we have done from this side of the fence indicates the incidence at between one in every 20,000-40,000 neck adjustments result in arterial dissection leading to strokes), but when you become that "one," the fact that it does sometimes happen whether it is 1 in 5 million or 1 in 20 thousand), becomes much more pertinent than the being comforted by the low likelihood! More videos telling similar stories of vertebral dissection leading to stroke after a chiropractic adjustment, sometimes even with fatal endings, are documented on the Chiropractic Stroke channel on Youtube, including actor Kevin Sorbo's (stroked after a chiropractic adjustment, while staring as Hercules in the t.v. series) story.
Here's mechanically, how easily it could happen, so this is a risk I would never be willing to take now. The thing I didn't understand about human biology, prior to my strokes, was that your two vertebral arteries (back of neck) run directly through the top three vertebrae. This means that these arteries are vulnerable to any kind of trauma to the neck (car accident, domestic violence, chiropractic adjustment, self-manipulation (popping your own neck), etc.).
Any sudden, forceful movement to the neck in a twisting motion, has the real potential of over-stretching and over-taxing an artery (think rubber band that has been stretched out repeatedly and then is stretched beyond maximum capacity, so snaps) and combine that with the edge of hard bone from a vertebrae that should act to protect the artery, but instead becomes a catalyst for pressure against that over-stretched "rubber band." The artery is then dissected, cut, snapped, caused to rupture, or in one doctor's descriptive of my own injury, "shredded."
I understand that ischemia (lack of blood flow) is often the cause of post-manipulation strokes and I imagine that this might have to do with the artery somehow becoming "pinched off" or clotted as a direct result of the manipulation, maybe a bleed contained within the artery walls that then clots, or a complete severing of the artery, preventing blood flow to the brain (?), but as these explanations are only my own attempt to understand the causes behind a kind of stroke other than the rarer ones (20%) I initially had, I will not try to explore vertebrobasilar ischemia following MCS further. Wikipedia gives a general explanation of the most typical verterbal artery stroke dissection. (If anyone cares to further clarify in the comments, please be my guest!) I just felt it prudent to say that arterial damage does not always present as a bleed as mine did.
Post-manipulative stroking seems to be a fairly slow process for some people, starting to exhibit stroke-like symptoms in the waiting room after the manipulation, on the car ride home, not until that evening, within the next few days, or even not diagnosed for up to a full month later, according to several personal accounts I have read. I would imagine that in these cases the artery was significantly weakened via manipulation, perhaps bulging and forming some sort of aneurism or clot, then only obstructs or produces bleeding at a later point.
For some of us, it is much more immediate, like my massive bleeds before I could even sit up on the table, and the artery's extensive damage that was so severely injured that it took about a month and 4 more strokes (clots formed as the artery attempted to repair itself) before two semi-emergency surgeries were required on Thanksgiving morning to allow the artery to heal enough (another 6 month process) to keep from throwing more clots!
According to this article on risk versus benefit of this kind of adjustment, "Although the risk of injury associated with MCS [Manipulation of the Cervical Spine] appears to be small, this type of therapy has the potential to expose patients to vertebral artery damage that can be avoided with the use of mobilization (nonthrust passive movements). The literature does not demonstrate that the benefits of MCS outweigh the risks." Or as I have repeatedly read and heard, if you are going to pursue chiropractic treatments, never allow the doctor to manipulate your neck. It might initially help, but it just isn’t worth the risk! (To add insult to literal injury, in my case, the left side of my neck still bothers me tremendously, has required HOURS of physical therapy attention, two years and all the strain of six strokes later! So going that day didn’t more than very momentarily address the issue of why I ever went in the first place!) “Nonthrust movements” would encompass tradition stretching and physical therapy that does not take the body past its own natural range of movement. One therapist explained me how the body has 4 levels of normal movement and this is all physical therapy will strive to achieve, while chiropractic adjustment purposely seeks to move the body into unnatural 5th levels.
5. Desired Results (Click on subtitle for direct link to this portion of the story.)
I had never heard the term "chiropractic stroke" before I got to the hospital and had no idea that there was any kind of risk associated with upper neck adjustment. We found out, only after the fact, that informed consent is required in 40 out of 50 states in America. (This from some information my husband read while I was still in the hospital. If anyone can locate a supporting link, please let me know.) Nevada is not one of them. :( One thing I would like to see come out of my story, is for Nevada to establish the need for informed consent and awareness of risk before a chiropractor is allowed to attempt any cervical spinal adjustments.
Do I honestly think such information would have done much to change my mind before I underwent this procedure? Honestly, maybe not. Human nature is to tend to think, "The odds are so low. Surely this won't happen to me!" And how often do doctors shove paperwork at you and says, "It is not likely to happen, but you need to be aware that all these complications, and even death, are potential outcomes of the surgery you are about to undergo. Please sign here that you understand the risk."
That's probably about all an informed consent law would even accomplish, realistically. But talk to almost any radiologist or neurologist out there and you will hear similar horror stories of ruined lives, so I hope you find my own information to be persuasively informative enough that you will at least think twice about letting anyone twist your own neck! Had I know of the potential risk, it might or might not have changed my mind, but at least I would have gone into it knowing of the possibility and the hospital might have known more of the potential of what they were treating, rather than making it such a low initial consideration because I was "too young" and not in the typical stroke age range (something that is a misnomer anyway as, while it is most common to have strokes in the population over 65 years of age, there are vast numbers of people of ALL ages who stroke every day!).
6. Law (Click on subtitle for direct link to this portion of the story.)
So, onto our next most-frequently asked questions concerning liability and legal action. Shortly after my accident we were informed that my chiropractor did not carry any insurance for his practice. We never received any legally sworn testimony to this fact (yes, we requested a sworn affidavit, but have never seen one), but we tend to take the statement at face value because 1. chiropractors are not legally required to carry insurance to practice in Nevada, 2. it has become our understanding that, while reasonably priced and logical, it is common practice for chiropractors not to undertake this added little expense of operation in our state (and are even coached on specific wording on how to express sympathy when someone has a stroke so as not to implicate themselves as carrying any responsibility), 3. had he actually carried insurance, it would have been a simple matter of contacting his insurance company to start his claim rather than taking the risk of a lawsuit against his own person.
Facebook - On our own, the future is a surprise, yet God directs our steps and is with us always.
At first (in the hospital) I really struggled with the idea of taking legal action at all. After all, I do not believe this doctor had any vindictive motive nor intent to harm me. My strokes were exactly what we've called them all along, the result of a true accident. Eventually, several doctors, therapists, family members and godly advisors helped me to understand that seeking compensation for medical need wasn't vindictive either, but was simply the way our system is set up to address these kinds of monumental needs, the reason people buy insurance in the first place.
Because he had no insurance, he likely would not have the assets to cover our entire needs, but he would be required to shoulder at least a portion of the expenses. My Christian rehab hospitalist was someone who especially moved me when I asked her straight out for her opinion, not as my doctor, but as my sister in Christ, how she would think I should proceed with Biblical principles about the law in mind. She did not hesitate to tell me to consider my responsibilities as wife and mother, future medical needs, and the best interest of my family, for whom she better understood the long-term implications of my strokes and the devastating ramifications (financial and otherwise) of the extent of my injuries.
So we spent weeks researching our options and finally moved forward with a lawyer. We prayed for God to clearly open and shut doors and give us wisdom and clarity in how to proceed with each step. Shortly before our 1-year filing deadline, we learned that my chiropractor had closed his practice shortly after my strokes, temporarily joined his brother (also a chiropractor, located on the other side of the valley)'s practice for a brief timeframe, then (right about the time my records were requested by our lawyer), had moved out of country, about 4 months after my initial strokes. It felt like a punch in the gut that, in the amount of time I had spent in the hospital, plus an equal amount of home and outpatient recovery and hard-core therapies, that he “ran away” to live his life somewhere that wouldn’t be such a daily reminder of all that had transpired. And here I sat, still unable to even walk on my own! In all fairness, we do not know for a fact that this move was NOT already in the plans even before my strokes, but we do not know that it was either. Either way, the timing felt rather suspicious.
Bottom line, by probably even the time I was willing to start the pursuit of legal action to address liability, he had already moved outside of U.S. jurisdiction! When this fact was uncovered, months after it was too late, our lawyer advised us that we could continue to court on principle and had a very strong case and high likelihood of being awarded a significant judgment in our favor. But because he was no longer in country, ultimately "winning" such a case would only be a hollow victory because there would likely be no implementation possible and the legal fees would be several thousand dollars out of our pockets, should we desire to advance the case (thus why it would not be prudent to file now, in the event that he might or might not someday return to this country). I looked at both Rick and the lawyer and replied, "You can't get a much bigger 'closed door' than him leaving the country!"
At that point, we let the lawsuit drop and the statute of limitations expire on our case. So no help there, and no Social Security or other forms of disability income because I don't have enough "work history" to qualify! (Homeschooling one's children does not legally count as being a contributing member of society I guess!) We were very blessed that our health insurance covered much of my nearly 2 months of hospitalization as well as several therapy items and appointments over these past two years (though we have had to really fight for some of this), but there has already been much they haven't covered. I keep leaning on God's promise that He will supply all our needs!
7. In The Crosswalk (Click on subtitle for direct link to this portion of the story.)
As my husband summed it up, what the doctor did was really no different than if one of our children were in a crosswalk (expectation of safety, like I had when entrusting myself to a medical professional), were hit by a car, the uninsured driver expressed "feeling bad" at the scene of the accident, but then fled his responsibilities and left the country. I feel like, if I were to meet the doctor face-to-face today, I would likely crumble (unless the typical inability to express any emotion were to kick in and I would simply act like a robot, as I would guess my emotional incontinence (PBA) would likely play a big part in my outward reaction now too!), for I still can't even talk with my husband about him or the event without totally loosing control of my emotions. My entire family's lives are so upended by his actions. Things that aren't directly stroke related, like our kitchen floor or van repairs/replacement, or college saving, don't happen because the funds we would have used to care for those things are already way more than spoken for, medically now. I still get angry at times and so very, very frustrated! The emotional (and physical) baggage of our new reality has been, and continues to be, so terribly, indescribably weighty!
But I would also want my doctor to know that, regardless of what I express on the outside, in my heart I truly believe that I forgive him. (I guess there is no way to REALLY know without facing him, like the story Corie Ten Boon told about how she felt forgiveness in her heart until the day she once again came into direct contact with one of her guards at the concentration camp where she had been imprisoned and watched her sister die, then had to reevaluate forgiveness all over again.) God has forgiven me more than I could ever repay.
8. One Victorious Stroke (Click on subtitle for direct link to this portion of the story.)
In our family we have what has become known as THE SONG, including words along the lines of, "I go where God and glory are...this broken body I now resign..." In a totally different context than a physical stroke, meaning brain damage, this song also includes the word "stroke," as in a measurement of time, but to me there is profound double meaning in this word. Everyone in the family knows I can't even try to sign "the song" without a torrent of tears. But I have made a decision that, God helping us, we are somehow going to make what Satan intended for harm "one victorious stroke" for God's glory. I want to make this my new victory theme song. Emotionally, I still don't know how I will ever sing it, but in my heart, I want to exchange the devastation, sorrow and loss for a proclamation of God's sovereignty and grace in His decisions for my life, 2 years ago today, all that led up to this event, and in every moment since.
Absent from Flesh, "The SONG"
Several things in this song prick my spirit, but the primary struggle was one against suicidal thoughts and a longing simply to be Home. After getting so close, Paul's words resound with me as never before, "For to me, to live is Christ and to die is gain. If I am to go on living in the body, this will mean fruitful labor for me. Yet what shall I choose? I do not know! I am torn between the two: I desire to depart and be with Christ, which is better by far; but it is more necessary for you that I remain in the body. Convinced of this, I know that I will remain, and I will continue with all of you for your progress and joy in the faith, so that through my being with you again your boasting in Christ Jesus will abound on account of me." - Philippians 1:21-26.
From Facebook - I've always loved storms, but in a new way since my strokes!
Psalm 42:7-8 I hear the tumult of the raging seas as your waves and surging tides sweep over me. But each day the Lord pours his unfailing love upon me, and through each night I sing his songs, praying to God who gives me life.