Writing this part was much harder than I imagined it would be. It still feels very unfinished to me. There is no way I can describe the most intimate corners of my struggle in one part of a blog series. I’d never arrive the series to its intended end point. I suppose it remains that endings are merely finished beginnings. I’ve decided some of the work I’ve been doing here will be the beginning of the fantastic new adventure of working on writing a book. I’ve always known I’d do it someday. I’ve been hearing I should write a book since the third grade. I wrote my first poem before I even knew how to form letters. I am undoubtedly gifted with words. It’s been confirmed and affirmed again and again. I know words as they know me. It’s simply that, as I’ve said before, I’m famously unpublished. I never believed that I wasn’t a writer however, I still question if I’m ‘worth’ publishing. But I will write anyway. I will finally take the risk – because in the words is where I am known.
Two and a half years ago, sitting in a doctors office listening to very disappointing news, something clicked in my soul when it shattered onto silence in the form of tears coming from the face of the doctor in front of me. The doctor who had to tell me the hard-to-say words. A summary of words that word spoken over the course of three appointments: It goes against my hippocratic oath to recommend you carry your own child. It goes against all the evidence I have in front of me to suggest you try to harvest your genetic material, and in fact some of that evidence would contradict that oath as well. We will have to explore other options. Then she said three words that changed my life. Third Party Reproduction. I knew the instant those three words were uttered exactly where my story started. I finally had the story worth writing! [Internal ‘gut check’ conversation: “It’s such bull crap that I believe this is the first thing I have worth writing about. Just because this is the first thing I have that could potentially be a best seller….c’mon, Kate, seriously? You’re better than that! Really? Why did it take this long? Why did it need to be this big?…It didn’t. Don’t believe this. I mean, do it, write it, sell it. Achieve the Dream. But don’t you dare believe it this is where your story ends. Or even where it started. You have so much good stuff worth telling inside of you…you are a writer.]
This Third Party Reproduction stuff was straight out of a Lifetime movie and it was happening to…me. As a famously unpublished writer, thirty-five years in the making, I’m stammering as get this next part out. I’ve come upon this crash of these separate areas of my life – faith and family building – unprepared. I’ve spent incredible effort keeping them on separate plains; I never saw the crash coming. On the night Addie announced her synchroblog for the Night Driving release, I was sitting in the rubble before I knew how it happened. The crash that happened then is under a heap of history that needs to be told; if for no other reason than – “I have never“…”told the whole thing.”
Please stick with me, especially if my list of ailments isn’t your thing. History informs the present because of what we have learned. The bits of history I will touch on in the next two parts of this series are not especially crucial to our Team Dream Baby journey. However, the piece that matters is that I’ve lived through “what came before” to continue writing this unusual legacy of love. My health history, twisted and complex, put down a lot of the roots for our path to parenthood even before we learned the finality of the issue that prohibited me from becoming a mom by traditional/biological methods. Since “normal” is not the type of game I like to play, when we learned what our options to achieve parenthood looked like, I pretty much faced it with a “Challenge Accepted!” response. While my heart was heavy with the weight of disappointment that it would’t be more “normal” – it felt so much like it fit for me. I do the unusual things usually, so why not this too? The winding road of medical mystery that began when I was a tender teenage girl has turned and turned and turned. From the winding emerged a woman who knows no more about where the road will end than she did when she was fourteen. But let me tell you some of how we got here:
Grab your flashlights, Brave Souls. The lights are about to go out again.
The Intersection of Faith and Family Building Part Two: Chronic Pain Chronicles
Sixteen years into our relationship, my neurologist continues to shake his head at me and call me an enigma in our regular appointments. He’s basically been doing that since the day we met. I baffle really well trained intelligent medical professionals on a regular basis. Sometimes I joke that part of my purpose in life is so they don’t get big heads and think they have all the answers. Though it’s a joke mostly, there is a space in my heart where – having baffled teams of doctors at The Mayo Clinic and several University Hospitals and all the specialists I see – it also feels like a genuine part of why I’m here. I’ve made peace with it over the years but it wasn’t always so easy to joke about it.
In 1994 at what was then, Children’s Memorial Hospital in Chicago, two days before my fourteenth birthday, I was spun into a tornado of testing that plopped me quite roughly into a very big and equally vague autoimmune disease bucket. All because of a little blood test that revealed a high Antinuclear Antibodies (ANA) level. At that time I started following regularly with a rheumatologist and allergist due to my unique and most concerning onset of symptoms, which were hives and massive swelling. Over the years, that big “autoimmune bucket” has developed into a list of diagnoses rivaled only by the list of medications I’ve taken to treat the diseases and pain caused by them. These vague autoimmune bucket diseases and the regimens of drugs (mostly steroids, which often are worse than the symptom they are used to treat) ruined my young body. I have, for over half of my life, dealt with daily chronic pain. Fatigue so bad I could sleep for four days at a time without noticing or being able to care. Several hospitalizations. Long periods of time where I couldn’t even get out of bed. For months.
As a sophomore in high school, age sixteen, I landed in an Emergency Room for blinding pain that turned out to be ovarian cysts and endometriosis. This required the addition of a gynecologist/surgeon to my growing cumulation of doctors. I had three surgeries for cysts and endometriosis before I was twenty. At thirty-five, the surgery count on my female region is up to nine. I have pelvic ultrasounds more frequently than most people go to the dentist. I am looking head-on at the devastating potential of an “any day now” partial or full hysterectomy the next time my lady bits misbehave. (I must insert here that for the last several years, my goal was to make it to thirty-five before I needed a hysterectomy. Now having passed that finish line, I feel relieved. I’m still young for a hysterectomy, but not as young as I could have been.)
Meet 1998/99. It was supposed to be the beginning of my life. I was a seventeen year old college freshman. My career as a journalist was at my fingertips – only four years of college and then I’d write things that mattered for real. No longer would my writing be confined by youth; stuck in district writing competitions, small local papers, school newspapers, or my own journals. It would be trained and honed. Polished. Professional. In four short years I’d be a degreed writer whom people would take seriously. Rather than leaping into a brilliant career as an award winning journalist, I got slammed with a new symptom. Headaches that never went away. At the onset, I was so debilitated by the pain I was forced to quit a college I loved only having been there for five weeks. Instead of experiencing classes, all-nighters, and the “freshman 15” I moved back in with my parents just before my eighteenth birthday (le huge sigh). I took time off from college and got 15-20 injections of steroids into massive trigger points and nerves in my head every other week in attempt to manage the pain. At that time, I added a neurologist, various headache specialists, and a pain management doctor to the line-up of medical professionals I was rotating into the field of me.
In 1998, age eighteen, I was officially diagnosed with Systemic Lupus Erythematous (SLE). Shortly thereafter came a strong suspicion of Multiple Sclerosis (MS) for which I am continually monitored. But here’s a kicker to the MS pseudo-diagnosis…since I only have one lesion on my brain I don’t get the official diagnosis (not that I need anymore of those) or any of the treatment protocols involved with MS, just some of the bizarre and life-altering symptoms. This diagnosis and pseudo-diagnosis confirmed I had been correctly plopped in that vague bucket of autoimmune disease years prior. Eventually, I returned to school part-time at a community college while learning how to navigate the headache that never ended.
I determined pretty quickly (in that short five weeks I spent in the first ‘real journalism class’ I took) that I likely did not have the competitive nature that journalism would require. So I took my time at community college just gathering the pre-requisite classes I’d need for whatever I got a degree instead of the journalism degree I frankly couldn’t hack. It wasn’t really the time for figuring out what career I wanted to pursue anymore. Life was reduced to trying to get to the bottom of whatever was causing this headache and make it go away. I tried so many different medications during that time that I cannot even list them all. Nothing worked. I was diagnosed with Migraine, Occipital Neuralgia, Chronic Daily Headache, Tension Headache and probably some other types of headache like-things I have since forgotten.
The headache monster became so intense and disruptive, that one year into my second-fiddle Elementary Education degree at Northern Illinois University, I underwent surgery to have a Medtronic Neruostimulator on the nerves in my cervical spine. My nerves were seriously messed up and responding to the pain by creating more pain. It was a vicious cycle my body couldn’t stop on its own. At the time, these devices were mainly used in spinal injury and chronic back pain patients. There was little evidence to support the use of this type of system in the cervical spine. It wasn’t experimental, per se, but I recall significant conversations about the risk/benefit factors involved. In addition to hours in conversation and consideration, I had to go through a six-day trial period of using an externally controlled device before they would do the full implantation. I walked around for those six days with wires visibly hanging out of my head. I couldn’t shower. I covered my greasy hair with bandanas and only went places that were absolutely necessary.
The pain management doctor I was seeing at the time was as hopeful about the outcome as he was aggressive about treating my pain. He explained that the Neruostimulator would work by interrupting the nerves with an electrical signal. Instead of the pain sensation that had become their habit, the hope was to distract my nerves enough so that my brain would perceive these electrical signals and feel that sensation instead of the pain. If it worked, my laymans understanding gathered that it would be trickery at its finest. In late May of 2002, they put me in a gown, shaved part of my hair and cut my head open in three places. They placed four sets of leads onto the nerves they had identified as malfunctioning. They also cut open my right side (just above my ribs) where they put the titanium battery that powered the leads which sent the stimulation to my very confused cervical and occipital nerves. Two more cuts were made on my shoulder/upper back where they were needed to feed the wires to connect the battery to the leads through my body. This device came with a clunky remote which allowed me to turn the system on or off and to adjust the level of the stimulation within preset parameters define by the physician and Medtronic technical support folks. Basically, I felt like a robot! One of my friends in college nicknamed me Vicky.
It wasn’t brain surgery. But it sure wasn’t easy either. There was a part of the surgery where they had to wake me up to make sure that the leads were placed correctly. For me the experience of surgery is usually a giant blur, but I remember that moment as though it was yesterday. Recovery was a bitch. I had to wear a neck brace for a couple weeks while the incisions healed and at first there was so much pain from the surgical sites I was deeply discouraged and doubtful about the outcome. But you know what? It worked! The pain from the headaches reduced by a little over 50% and I could function (somewhat) normally again. For the first time in five years I felt a little bit like myself again. Trickery at its finest, indeed!! I started my 2002/03 school year with hope for a year of less pain.
One morning in early September of 2002, I was putting my hair in a pony tail before class and there was a sharp tearing feeling in my head. Suddenly the electrical stimulation I’d grown accustom to feeling on the base of my head was not where it was meant to be. The lead shifted and pulled the stimulation down; the sensation moved to the right side of my neck and down into my shoulder. I ran to my bedroom to get my remote. I shut the system off. I called the doctor. I went for in depth fluoroscopic x-rays. I didn’t need them to tell me that/where the thing had moved. I knew exactly where it was. Sometimes I can still feel it there in the side of my neck where it didn’t belong.
The first revision surgery was in October sometime. They weren’t able to get the electrodes back to the exact place as they had been the first time. As a result a percentage of the pain came back. It was still manageable in comparison to the pre-implant pain, but I was so mad about it. While it was still better than before the implant, it wasn’t as good as the first time. The first implant had reduced the pain roughly by half. It was still a lot of pain. It just wasn’t life-halting pain anymore. Before the revision, I had been given four months of very necessary relief. Simply putting my hair in a ponytail robbed me of the half as good that I felt from the first surgery’s 50% pain reduction. To say that dipping again below that 50% improvement mark felt unfair doesn’t do justice to the emotional hell it was reconciling with this new less-than-half-better pain reality. I can’t tell you how long it was before I attempted a ponytail again after that first revision surgery.
When the leads slipped again in late November we scheduled the second revision surgery for December after fall semester finals concluded. The following February the lead slipped a third time and my very frustrated pain management doctor admitted he’d reached his limit. He called in reinforcements in the form of a skilled neurosurgeon familiar with Medtronic systems. We consulted his training and wisdom for a better solution. The neurosurgeon decided it was best to redo the whole damn thing. This fourth surgery consisted of re-entering the thrice entered surgical sites on my head and shoulder and re-opening the side incision. For the fourth surgery, the neurosurgeon would insert a small clip in the place they assumed to be causing the trouble with the slipping leads.
In my second semester of student teaching clinical, while I waited for that fourth surgery to take place, providence would have it, I got into a pretty terrible car wreck. I never saw it coming. The driver of the other car had pulled out of a street parking spot and T-boned my tiny favorite green Honda Civic on the driver side. It was a snowy February morning before 7am on a college campus and we were both issued tickets for the crash – me for failing to yield on a left turn; him for having not cleared off his windshield. To this day, when I replay that moment over in my head, I’m positive he was not there when I started my turn. There was frost and snow on his windshield when the police arrived on the scene. We were both at fault according to the report, each responsible for our own damages. One of the officers told me that he was pretty sure my account was correct and that the other driver pulled too quickly out of a parking spot without clearing his windshield.
My already pained body hit its physical limit that day and synchronously an emotional one. It is a day that is burned on the memory of my soul. There was the glass in my eye from my head hitting and breaking the driver side window, the blue suede shoes (cue: Elvis singing in my head in the middle of all of this) the driver of the other vehicle had on his feet, and my most favorite car getting crushed beyond repair. There were the jaws of life and that loud sound they made tearing my tiny car open. There was the backboard. The neck brace. All the paramedics with their careful jolting movements of me. There was the burning pain in my shoulder that made my constant headache seem dull. The rest of me went entirely numb. I was absolutely terrified I was paralyzed until the CAT Scan result showed no issues. It was mostly shock, a little blood, and a really banged up shoulder that needed a sling for a few weeks.
Knowing I needed her to without me even telling her so, a treasured friend agreed to forget the accident happened (though she saw the whole thing unfold in front of her apartment building that morning) and shuttled me, as we had planned to go, to a weekend away at an InterVaristy retreat. She pushed my deflated still-in-shock-self around in a wheel chair all weekend. While I don’t really remember the retreat – there were undoubtedly large amounts of pain killers involved – I do remember the pain. The physical pain was secondary to the emotional pain. The end of my rope had become shreds, impossible to grasp any longer. I remember, after realizing I was alive and not paralyzed, this overwhelming sense of being relieved that the leads had already shifted. If they hadn’t, the accident would have likely cause them to shift. It was nice that the surgery to fix them was already scheduled for spring break; one less thing to worry about. I recall thinking that a variety of pain was a nice way to change things up from the monotony of only always the headache pain. The pain meds were also nice. They dulled the edge of the pain regardless the source.
While I didn’t recognize it as such initially, now I mark that weekend’s events as the beginning of the breakdown of my faith. It took years to completely break but it was then that I’d finally had enough. I had my limit of feeling the pure punishment of this unrelenting pain. I truly, madly, deeply believed in and loved a God who could heal pain. Yet that same God was not healing my pain. It felt like He was only giving me more. I concluded something must be wrong with me. I probably wasn’t worth healing. Conversely…maybe God had called me to this life of pain…for a greater purpose. Maybe I was meant to handle harder things than my peers. Maybe this pain was His Will for me. Over the course of the next several years, I wrestled with the dichotomy of those two lines of questioning in some pretty bizarre ways.
In hindsight I am glad that His protection was paramount to my emotional ending point. I’m pretty sure no one really knew how miserable I was inside during the next few years. I played them like I had everything together and I pursued God with everything I had. I was pretty sure no one had any idea that I had, in truth, challenged God to a duel over my soul. I declared an all-out war on the mistake God made when He created me and I dared Him to prove me wrong.
The Intersection of Faith & Family Building continues soon…
Part Three: Continuing Chronic Pain Chronicles
The choices I made from 2003 to 2007 were really an internal litmus tests for God’s love for me. Did He really love me enough…to take away my pain? They were also a litmus test for my worthiness to be loved by Him. What was I doing wrong in my pursuit of Him that He didn’t heal me and restore my broken body?
After a failed attempt at graduate school in 2004 I was convinced I needed to change my focus. Maybe God was calling me to full-time ministry!! If I worked for Him full-time in a ministry role, surely that would make me worthy of His healing power!!…
… a decade of wisdom under my belt since I audaciously challenged God to a battle of wills over my very life – I now understand Him in ways I only pretended to comprehend in the days I lived a more ‘on fire’ kind of faith than I do now. My faith is woven through this rare medical mystery that lives inside this woman called Kate. I realize now that the events that transpired in the next phase of my life were not a war. God simply didn’t allow them to become the war [over His “mistake” (in me) that] I intended them to be. Instead, the next years of my life were filled with His amazing and powerful grace realized in new and profoundly simple ways.