February 10, 2017
I shared a song on my FaceBook page by the Australian duo, for King and Country, “Let my life be the proof of Your love”, wondering what that could possibly look like, but hoping that it might become a reality in my life. Somehow.
Part I
October 20, 2017
At the sound of my alarm clock, I reached to press the snooze button. It’s not something I usually do, considering I’m a true morning person, but my dizziness seemed to be a little more overwhelming than normal. Once again, I awoke feeling light-headed. It’s a feeling I’ve grown accustomed to for some months now, especially in the mornings. I learned to slowly sit up and remain seated on the edge of my bed waiting for this feeling to pass before I got up to walk. Today though, it was a little harder to overcome than usual, and it felt like my heart was racing, as if I was experiencing some unprompted anxiety attack. Being a logical person, I quickly examined my life: no real stressors, no burdens that I’m wrestling, and no concerns in my life to merit such symptoms, so hopefully, this is just a temporary condition.
For a couple of years now, I’ve made it a habit to wake up early and work out at the local YMCA at least a few times a week. The Y’s proximity to my home ensures that I feel the guilt pangs if I don’t go. A quarter mile further, and I’d probably never have even joined. It makes for a long day to exercise at 5:30 a.m., return home to get my three sons out the door to school, and finally go to work a full day at my job. Returning home to make dinner and crash in bed was normal. On days I didn’t exercise in the mornings, I still awoke early to do at least a couple of loads of laundry before my sons woke up, and get everything ready before heading to work. Functioning through this cloud of dizziness each morning was becoming more and more difficult.
I didn’t always work outside of the home, so dealing with all my to-do’s was more bearable. I was fortunate enough to be a stay-at-home mom for most of my sons’ young lives. During those years, I maintained my work history by sub-contracting some work from home. This was a huge blessing since it allowed me to be with my boys in their early years, while helping our finances which were in dire need of a more serious second income. Working from home, however, was certainly not easy. Young boys don’t tolerate mom sitting at a computer well. I remember working on an enormous report when I was initially hired as the executive director of a Bar association. After some long weeks of trying to make sense of the history of the organization and reviewing its finances, memberships and structure, I was determined to hammer most of it out in preparation for the report I’d have to give to the board the following week. I was exhausted working through it all and was determined to tackle most of it so I might relax a little the next day. To my absolute horror, my computer screen suddenly went black. I was mortified. Much of my hard work, I knew, was gone. I was never very computer savvy, but in 1997, my tech options were far more limited than they are currently. I knew my computer lacked the ability to back-up the document I was working on, and if I were a little more attentive, I would have saved it frequently to retain all the data entered. Unfortunately, I failed to do so.
As I stared in horror at my blank screen, I immediately thought it was due to a circuit shorting out, or a computer glitch. We were living in an old house, after all. Unfortunately, I quickly realized that my one-year old son unplugged the thing from the wall, likely in protest. What can I do?! His innocent face and curious mind were to blame. That combination made this infraction unpunishable. I proceeded to plug the computer back in, restart the thing, and realize just how much work was lost. It was substantial, of course, but my young son was the reason I was working from home in the first place! I knew the burden of making this work rested squarely on my shoulders alone. I’d have to do better and get organized. It wasn’t quick, and it wasn’t easy, but somehow, we all figured it out…but I digress.
As I sat this morning on the edge of my bed, trying to pull myself together to drive to my now full-time job, I pondered how long I’ve been plagued with these dizzy spells. It’s been several months now, at least. However, it wasn’t serious enough to address with a specific doctor’s appointment devoted to this symptom. I did mention it to my doctor at my last check-up, and he was the one who suggested my process of getting up slowly. I’ve dealt with hypothyroidism for over 20 years, and knowing that ailment well, we added this to my list of symptoms. I’ve had my ups-and-downs even with this condition to the point of visiting a specialist to help me control my chaotic hormone levels. Unfortunately, she prescribed some meds that made about a third of my hair fall out! She meant well, but the thyroid can be a particularly moody thing to treat. Knowing all this, I knew there was probably room to blame this new symptom on that medical condition. So I did, and proceeded to go on my way to face another day.
On this day, however, upon arriving to my workplace, I continued to experience the dizziness and loss of balance. I tried to remain calm as I felt my anxiety increase. I sat at my desk, considering my options: go home and see if some sleep will make it all a distant memory; call my husband and cause him unnecessary worry; go to the local hospital; or decide like any sane person to just research my symptoms online. Google it was! Finding no peace through my searches, I e-mailed my husband about what I was experiencing. His response? “Why aren’t you at a hospital already?!” A sweet co-worker, who happened by my desk, noticed something was awry and proceeded to question me. Following our conversation, she consulted with another one of my colleagues, and soon we were heading to the local ER.
There, I was faced with a battery of tests, mainly focused on my heart and blood work. This made sense. After all, in the previous year, over one in three adult women experienced some form of cardiovascular disease. Sobering statistics, to be sure. Plus, I exhibited no other burdensome symptoms, and according to my lab results, I was as healthy as a horse. By then, my husband arrived and sat with me in my examination room, awaiting the attending physician’s assessment. Once she arrived, she explained that I’m free to leave with a clean bill of health! My husband became irritated and questioned her conclusion, especially pertaining to my dizziness and loss of balance. The physician explained that it was likely vertigo. Now, having experienced vertigo several times in my lifetime, I consider myself to have some expertise in the area, and I explained that this certainly didn’t feel like vertigo. Nevertheless, with nothing else to go on, it was decided that whatever I felt “might turn into full blown vertigo soon,” so armed with a prescription for Meclizine, we headed home, for the chance to sleep it off. By now, of course, I realized that’s what I should have done in the first place.
In the coming days, I tried to work while taking the medication I was given, but found myself blankly staring at my computer screen. It was as if I was sleeping with my eyes open…and this was reflected in my work performance. I decided to stop taking the drug. A few more weeks, and my dizziness seemed to reduce, to the point that it was once again only occasionally a nuisance. I basically forgot about this episode, reminded only when my hospital bills began arriving in the mail. Those caused me to feel lightheaded on a whole new level. It would cost me over a thousand dollars out-of-pocket, to get my “clean bill of health”, and that was after insurance, of course. I didn’t complain though. Health is a priority to this wife and mother of three!
Life continued, day-by-day, predictable and what some would consider mundane. However, I love my life! I am completely in love with my family, three incredible sons, and we were embarking on our 25th year of marriage to my husband. Plus, I always felt like I had so much to accomplish in my life. I couldn’t put my finger on it, but always knew I was here to accomplish a purpose. Somehow, I knew that I’d have the privilege of seeing God’s love for me in my life in some new, unexpected way. I was hoping it would be as a result of some phenomenal financial success, or a difference I could make in someone’s life, maybe some witty invention or idea that I’d come up with. Having no college education, no major achievements to speak of, a confusing cultural background, and the realization that I wasn’t very young anymore, all combined to a general feeling of inadequacy. I felt as though I was less of a complete person than those around me. Like, I just didn’t fit in. Yet, I felt like I had some unfinished business to complete in my lifetime. I’m still not sure I’ve found what that is yet, but I’m determined to figure it out.
Part II
November 20, 2017
Finishing up another workday, I decided that I drove around with a large bag of donations to the local Salvation Army for long enough. Today was the day I would go out of my way to drop them off and hopefully clean out my minivan that Thanksgiving weekend. The detour wasn’t terrible, but not my regular route. As I stood in a long line of stopped cars in the heavy, rush hour traffic, I answered a call on my cell phone from my sister-in-law, Erika. The cars around me were moving at a snail’s pace, so I wasn’t concerned about safety. I just put the call on speaker and chatted with her while waiting for the road before me to clear. I was the last car in a long line of vehicles that was stopped for a few minutes. I certainly wasn’t prepared for what would happen next.
The phone flew out of my hand from the massive impact, and I screamed in shock. Erika, on the other end of the line, yelled for me, trying to find out what happened. I heard her panicked voice on my phone, but couldn’t find the thing anywhere. I just yelled back that my car was hit, but didn’t think I was seriously injured. Once I found the phone on the floor of my car, I grabbed it, but was barely able to talk from the shock of the impact. I realized my hands were shaking out of control, and communicating was becoming difficult and exhausting. I explained I needed to call police. That, however, was easier said than done. As it turns out, dialing 9-1-1 with hands as shaky as mine became an arduous task. After multiple tries, I was finally able to dial the three numbers. I felt far too shaky to exit my vehicle, so I stayed put, awaiting help. The man in the vehicle that rear ended mine finally came by to see if I was okay. I explained that I thought I was, but called the police already. He was upset, but didn’t appear inclined to leave the scene.
I could tell by what I saw in my rear view mirror that his car sustained considerable damage. After a few more minutes, I made my way out of my car to inspect the rear, and found that the back door of my minivan was completely crushed. When I returned to the driver’s seat, I was relieved to finally see flashing lights. Help was on the way. By this time, I phoned my husband, Louis, who was just leaving work himself, but assured him that I felt shaken up but fine and was pretty sure my car was going to be drivable. The police officer spent a total of about a minute with me taking a quick statement and grabbing my insurance card and driver’s license before heading back to his car to make the calls they make.
Now, I don’t like this kind of thing. This whole fiasco was holding me up from getting home, kept me from making dinner for my family, and I knew I’d have to call my insurance to begin the exasperating process of having my vehicle repaired. Of course, the clothes I wanted to donate were still sitting in the rear of my car. By now, I knew they weren’t getting donated anytime soon. This whole incident was just an unbearable nuisance. To top it off, Erika called back asking how I was and had the audacity to suggest that I go to the ER to get checked out! Seriously, that was not going to happen. I did not hurt my head, my airbag did not deploy, and the only vehicle that sustained really serious damage belonged to the guy who hit me.
It took me a little longer to drive home, being as shaken up as I was, but that was okay. My husband and my sons met me as soon as I pulled into our driveway. After greeting me, Louis walked around the rear of my car to inspect the damage, and immediately said, “You HAVE to go to an ER. That’s a serious hit.” Of course, he was preaching to the choir. I knew my car sustained a large impact, but I also knew I wasn’t physically injured. I knew I’d likely wake up with some aches and pains the next morning, but that was par for the course with this type of thing. Our conversation continued, and I stubbornly resisted his urging me to go get checked out. Finally, Erika called, and I quickly realized that her stubbornness rivals that of my own. She wasn’t backing down. She was on her way to pick me up to drive me to the ER herself. I finally gave in only if my husband agreed to stay home and make dinner, ensuring that our crazy evening would end in some kind of normalcy. Erika agreed to just take me there and return home to be with her family while I waited for any tests to be done. My son would come and pick me up to drive me home.
I figured that I’d managed to ensure this evening would be at least somewhat salvaged this way. We’d have a home cooked dinner; Erika would get home to be with her family; my insurance claim would be filed; and, after a good night’s rest, this would all soon be a distant memory. I was still frustrated to be wasting all the time at the ER though. Thankfully, this newer facility hasn’t yet been discovered by a majority of the surrounding populace, so very few people were there. Once I was checked in, the staff ushered me to the x-ray department for a CAT scan of my head. I’m told this is pretty much routine with the type of accident I was in. I explained that I felt uninjured, but came only to appease my husband and Erika. They proceeded to secure my neck in a large, round, clumsy looking brace, just in case I failed to notice that my neck was actually shattered. This whole non-medical event, as I saw it, was turning out to be a circus in my mind. Following a dizzying CAT scan, I was seated in an examining room to await my results. I knew everything would come back normal, since I felt fine. Yet, I was stuck. Erika now left, and after sitting for about an hour, I texted my oldest son, Mark, to come pick me up because I was expecting be released shortly. I stewed in frustration, ready to bolt the instant he showed up. How did I let them talk me into wasting so much time for a non-injury?! I could be spending this time so much better at home. How much was this stupid scan going to cost us? Did we meet our medical insurance deductible this year? Was the other driver even insured? How long would it take to fix my car? Was it even repairable? I became progressively more restless and impatient. The small ER facility’s staff nurse walk past my room several times, assuring me that the results would be coming soon. It was sitting for well over an hour already! To my relief, Mark finally arrived. I told him to have a seat because it might still take a little time. We made small talk, but not for long.
The nurse came back in and introduced two staff doctors who were on call that evening. Seriously? Did I need a whole team to tell me I can go home now?!
“Ma’am, have you ever been told you have Hydrocephalus?” one of the doctors asked.
“Um, I’m here because I was involved in a car accident. I’m fine. You might be looking for someone else.” I replied.
They confirmed my name and date of birth. “We have a neurosurgeon downtown reviewing the images of your brain as we speak. My suggestion is that you contact your primary care provider to help get you in with a specialist very soon. It’s generally difficult to get appointments on your own,” he said.
“I’m sorry, what are you talking about?” I objected.
“Your images are available and can be picked up to take with you. Your case is more progressed than what we normally see.”
“What are you saying? What is this thing….how is it treated?!”
“It’s spinal fluid that’s built up in your brain. Unfortunately, there’s only one way to treat it: brain surgery.”
And that’s the precise moment my world turned upside down.
Part III
You see, I don’t have any serious medical conditions in my family history. No cancer, heart disease, we even seem to be immune from bad habits like smoking and alcoholism. But some young inexperienced ER doctor, who is probably just doing his residency, says I would need brain surgery?! No. This had to be a mistake. Maybe the image was just blurry; maybe the person reviewing the radiology images was also inexperienced; maybe someone just failed to clean the lenses on the machine. So many ways this could be cleared up, and I was sure it would be. This would be just another ‘thing’ to add to my endless to-do list, and it certainly didn’t make me happy. I already had so many things to take care of, and Thanksgiving and Christmas were right around the corner! This would seriously impede on my time. Plus, didn’t I just get a clean bill of health a month ago? I was just beginning to receive the bills for that Emergency Room visit where I was diagnosed with vertigo. There just had to be a mistake. I was sure of it. However, by now, I was beginning to wonder which ER had the correct diagnosis.
During my lunch the following day at work, I proceeded to make some phone calls. As it turned out, getting an appointment truly would not be easy. I was extremely disappointed to learn that my primary care doctor would be useless in helping me find a specialist and land an appointment. I called one major hospital group in town and was only able to schedule the first available with a neurologist on January 29th . That was two months away! Stunned and disappointed, I decided to try the Cleveland Clinic.
Speaking with a scheduler there turned out to be no walk in the park. After explaining the reason for my call, and that I needed to see a neurologist, she asked if I received a diagnosis. I explained that I had, and gave her the name. Following a long pause, I asked her if I needed to spell it, assuming that was the issue. She insisted she had the correct spelling. Another long pause later, I began spelling H-Y-D-R-O… “ma’am, I have the correct spelling.” “Ok”, I mumbled, waiting through another pause. “Is that all?” she asked. “What do you mean?” I responded sheepishly. “Is that the only thing you were diagnosed with?” “Well, actually, that’s plenty!” “It’s not on my list,” she responded. Now, I’m a reasonably patient person, but this was getting out of hand. “Can you transfer me to the Neurology department and maybe we can nail down who I need to see?” “All I can do is send them a message”. “Fine.” She put my call on hold, and after a few minutes of waiting for her to return to my call, I hung up the phone. I decided to try back a minute later, hoping that I’d get to speak with a different scheduler this time. To my relief, the voice on the other end was different, as was her name. After a quick explanation, it turned out she knew exactly what I needed. However, she warned me that my appointment may not be for 2-3 months! I explained that I already had one set-up, but thought I’d try with them just in case they had a sooner opening. She pulled up the schedule of a well-known neurosurgeon who specializes in my treating my condition, and said, “Oh my, he had a cancellation for next Tuesday, but it’s an early appointment, at 7:20 a.m. Can you be there?” “Um, YES!” She explained that I needed the disc with the CAT scan images from my diagnosis, and any other x-rays of my head, regardless of how long ago it may have been. It’s as if she knew I was clumsy like that! After all, how many people have random x-rays of their heads at medical facilities due to a head injury?! I did.
CAT scan results in hand, along with the set of x-rays from my fall in 2013 that shattered my nose, we headed to see the neurosurgeon that Tuesday morning. Ever hear the old saying, “Denial isn’t just a river in Egypt”? Well, I realized I can certainly deny with the best of them. Sitting next to my husband as we drove to this first visit, I secretly “knew” the doctor would take one look at the images and conclude that this was not at all what it seemed; that some amateurs misinterpreted my results. Sitting in the examining room with my husband, while awaiting the surgeon’s findings, I felt my uneasiness increase. He finally came in, upbeat and friendly. I immediately knew I was right. If this were serious, he’d surely come in with a morbid, downcast demeanor. After introductions and making small talk for about a half hour, he finally addressed the topic at hand. By now, I had the impression that if this were all for naught, he would not have spent so much time chatting with us.
On his laptop, he pulled up about several images of patients’ brains that had my identical diagnosis, which he treated in preceding months. Each brain x-ray had some blackened areas in the center. These black areas, he explained, are fluid build-up that’s causing brain matter to be pushed against the skull as the amount of fluid increases. On some images, the black areas looked like two small bananas, or thick parentheses marks with their backs against each other, while others were smaller and not quite as defined in their shape. “And this is your brain,” he said, as he pulled up the final image. My heart sank at the sight of my brain, which had a much larger black area than the others. Mine looked like a large, distorted butterfly. “I’ll be honest,“ I slowly opined, “I think I win! Mine’s the biggest.” He slowly turned towards me and said, “You’re not wrong,” he said, “and this is why I find the brain is so fascinating. With your condition being so progressed, I have no idea how you’re still functioning so well.” To demonstrate what he meant, he walked over to the examining table and used the white paper covering it as his drawing pad. He drew a long, horizontal line on the paper slightly sloping towards the end and explained, “This is what brain deterioration looks like in most cases….a gradual slope downward, whether it’s dementia or a deteriorating brain condition due to cancer, a tumor, or other condition.” He then proceeded to draw another horizontal line, this time with a barely noticeable slope, but finished it in a sudden, unexpected vertical drop down. Then he explained, “This is hydrocephalus. There’s a gradual deterioration, and then a sudden crash.” As my mind raced to comprehend that terrifying fall into an abyss of nothingness, my husband calmly asked, “Where is she now on your diagram?” “Well, I feel strongly that she’s dangling her legs off the edge,” he explained, as he drew a circle on his illustration at the edge of the cliff. I was too stunned to speak.
Part IV
Our appointment concluded with him scheduling an MRI of my brain, and asked us to return to discuss it a week later. He explained that he’s taking me outside of his regular schedule, so don’t bother calling the main Clinic scheduling line should we need to reschedule, because they would have no record my appointment. Off we went, me in some level of shock, and my husband trying to be reassuring. One week later, with the MRI images in hand, we were heading back to see the surgeon. Once again, I secretly “knew” that this would be it. He would see these images and conclude that this more precise imaging proved that things would not be as serious as they initially seemed. In fact, maybe everything drained out miraculously and I wouldn’t have to have any kind of procedure at all! Maybe there was even some medicine I could take to reduce the fluid build-up; like some diuretic for the brain, or some antihistamine that would clear the thing out!
That, however, would not be the case. Our follow-up appointment on Wednesday, December 6th was just about as lengthy as the initial consultation, only because after reviewing the images this time, the doctor expressed his concern for the lack of drainage in my brain. Once again, he pulled out his laptop and showed us an image of a normal brain, where the fluids were visibly moving in a white vertical line on the computer screen. On my brain, however, it was as if that was nonexistent. “The movement is so slight that the MRI didn’t even pick it up.” He very casually explained that it was really up to us how we proceed, whether we schedule surgery now, or wait. However, he also explained that I would have to get this procedure done sooner or later, but it’s generally difficult, and sometimes impossible to recover from whatever medical event it was that would cause me to finally address it. My husband and I agreed to heed his suggestion.
The surgeon left the room, explaining that someone would be in to discuss scheduling. Great, I thought. What a way to start the new year! And what a pain to have to experience the upcoming holidays dreading my impending surgery. I was sure there was no way this would be scheduled anytime real soon. In fact, a co-worker had to wait two months for a kidney procedure! Oh well, I thought, we’d at least meet our deductible early the following year.
A member of the surgeon’s staff, a nurse practitioner, finally came in to our little examining room. “Your surgery is scheduled for Monday morning,” she said. “What?! THIS coming Monday?!” I responded in absolute horror. “Absolutely. This cannot wait. In fact, we’d like you to get your pre-op tests done today, if possible.” But my job! My co-workers will be blindsided! I haven’t even started my Christmas shopping! I had a hundred good reasons to postpone this procedure. I quickly realized that my husband was not on board with my reasoning, and my objections seemed to fall on deaf ears all-around. I sheepishly gave in. “Ok, Monday it is.”
After making a few phone calls on our drive back home to our parents and my workplace, I managed to get an appointment to get the pre-ops completed that afternoon. I couldn’t stop apologizing the following day to my co-workers for this unexpected turn of events. What’s worse, I had to take TWO WEEKS off to recover! I’d later learn that this was also a blessing in disguise because following those two weeks was my employer’s year-end shutdown week. This ensured that I’d have a total of three weeks to recover at home. Those weeks turned out to be just barely long enough for me to feel somewhat confident at my return to normal life. I proceeded to go about my last two days at work trying to prepare my co-workers for my unexpected departure. By Friday, though, my condition would deteriorate.
As I headed down the hallway that afternoon into my co-worker’s office, I found myself becoming extremely dizzy and began losing my balance. I had to hold onto furniture in the small space for fear of falling. Within seconds, I felt as though my legs wouldn’t hold me up, and I became extremely lightheaded. She asked me to sit down, and then compared the paleness of my face to the color of the file cabinet I sat beside. As I tried to make small talk in my awkward predicament, I realized my words took effort. I mispronounced some things, and my brain couldn’t produce the words I wanted to say. She quickly insisted that I was not leaving her office until someone came to drive me home. One colleague tried to convince us that an ambulance should be called, but I adamantly objected and said that even if it would come, I would definitely not go. I had several reasons for this: earlier in the year, I injured my back while cleaning out our cats’ litter box. That fiasco ended in an ambulance ride to the ER, which was extremely painful, not to mention costly. My second reason was that I was told if my condition would deteriorate, I should ask to be transported downtown to the Clinic’s main campus, where a neurologist could immediately administer treatment. However, I wanted my specialist, who I was already scheduled with, to perform this delicate surgery which was already scheduled just three days away. After all, he was well versed in dealing with what I had, was known for his successes in performing this procedure. There was no one else I wanted to entrust my brain to.
The final, and to me, the most compelling reason was that we were celebrating my youngest son’s 14th birthday that Sunday evening, despite objections from my family. I was determined not to postpone this important milestone, even though it was the evening before surgery. My son, Laurant, struggled with everything that was happening, and I really wasn’t sure how things would look on the other side. I knew that Christmas and New Year’s would look a whole lot different this year, but I was not allowing him to get lost in the shuffle of my medical issues. As a mother, you don’t want to skip any of those ‘lasts’ from your child’s lifetime; and my mortality became very real to me.
That Sunday is now a blur in my mind. However, I was so relieved to be celebrating with my family; and even more relieved that it turned into a potluck, since my ability to properly prepare for this particular birthday party was hindered by my increasing symptoms. My son was happy, albeit anxious for what would await us the next morning. We all tried to enjoy this last day before surgery. Our discussions were limited about the procedure, because this was his day, and I was thoroughly pleased to have been able to celebrate him and managed to put the procedure in the back of my mind. I began seeing how unusual it was, the way everything happened leading up to the discovery of my hidden condition, and the way everything came together so quickly to ultimately have been able to even schedule the procedure so soon after it was discovered. I didn’t have any fear of death, even though the surgeon acknowledged that albeit slight, it was a possibility with any type of surgery in the brain. My concern was mainly about how long my recovery would last, and if it would be a complete recovery, or if I’d live with unforeseen side effects. That night, my husband and I sat on our bed talking about what was happening to us. Holding hands, we realized just how close I came to some serious brain damage, or worse. God’s timeline was so incredible – we couldn’t help but see His creativity through it all. Yes, it was awful what we were experiencing, but in an odd way, exciting at the same time.
The following morning, my husband and I, along with my now 14 year-old son, headed to the hospital. My other two sons were enduring finals week at college, and I insisted they carry-on living life and continuing their studies. They could always come visit after my procedure in the evening, and I certainly wouldn’t be offended. Other family members were at the hospital, as well as my sons’ youth pastor from our church, who prayed for me before being taken for surgery prep. The support I felt, and the love that I realized surrounding me was tangible. A nurse finally came to get me from the waiting room. I said my goodbye’s to everyone, and gave them all hugs, only to realize that I had overlooked my sweet son, who by then had tears in his eyes. Sometimes, my level of ignorance astounds me. I rushed over to embrace and kiss my youngest son, and apologized that I overlooked one of the most important people in my life. Turning, I asked my husband to make sure Laurant’s face was one of the first people I see when I came out of surgery. He assured me that it would be so. Still experiencing heartache, leaving him and my little waiting room entourage behind, I followed the nurse to the pre-op area. My husband and then Erika were my companions for the few hours as we awaited my turn in the OR.
Once the IV was in place, and a myriad of sensors were attached to my body, I asked my husband to return to our son in the waiting room. I knew he was struggling with what was happening. He asked for permission to miss this day from school to be here with me, and I was more than happy to oblige. His sweet heart and gentle soul were hurting and anxious. Erika and I made small talk while all the shuffling happened around me. Finally, the surgeon and his team proceeded to have their huddle over me, discussing the procedure that was to follow. The anesthesiologist explained what I should expect. He proceeded to insert something into my IV tube. I asked if it was time to knock me out for the procedure? “Oh, no ma’am. What I’m giving you is only to get you through the prep phase. The brace that will go around your head is not something patients tolerate well. It will be much easier for everyone this way.” And that was my last pre-op memory.
Part V
My procedure’s technical name is Endoscopic Third Ventriculostomy, or ETV. It basically means that a hole is drilled in the skull and a tool is inserted to puncture a hole in the floor of the brain’s third ventricle. This small hole, the size of the tip of a ballpoint pen, enables drainage of the spinal fluid that’s built-up due to a blockage. I recall the surgeon explaining which side of the skull they’d drill the hole in, but the procedure itself was too much for me to mentally process and remember. Nevertheless, I remember him asking me to sign off on a document in the pre-op area. In hindsight, I’m confident this had something to do with determining which hand I regularly use to write, which means that is the side of the brain in which they’d enter. With some loss of fine motor skills, it’s important to enter on the side that will recover the soonest due to the need of use. Of course, I don’t remember when I was finally sedated. However, I completely remember waking up!
It was evening. I opened my eyes to the most Twilight Zone-esque sight I could ever imagine. My head was throbbing; I was nauseous; my throat was dry; my mouth was bitter; I couldn’t move; and it was quiet. I tried to figure out what was happening, but it actually hurt to think. “Stop thinking,” I told myself after a while. I tried to convince my mind to go back to sleep because I was obviously having a nightmare. I opened my eyes again when I heard people quietly talking in my room. My head was elevated, so I looked straight ahead and saw two people in white lab coats consulting at the counter across from my bed. Am I at a hospital?! What happened to me?! Did I get into an accident and injure my head? Why don’t I remember anything? I realized that this was my chance to find out, to ask those people in my room, but speaking seemed impossible! My throat was so dry and I couldn’t muster anything more than a whisper. After multiple attempts, I finally emitted a slight whisper, and did my best to call out to the people in my room. “Why am I here?!” Nothing. They didn’t even hear me. My second and third try were much the same. “Why am I here!!!” It was similar to speaking through laryngitis. However, the sound made its way to the white coats’ ears. One of them turned to look at me. “Oh, honey, it’s alright. You just had a little brain surgery.” Hearing those words, my aching head began pounding and my thoughts went into hyper drive. Trying to make sense of what she said was like the realization of all my worst nightmares. Brain surgery. Brain surgery? No. That had to be a mistake. The throbbing was now even more intense. Must stop thinking. “But why??!!!” I screeched. Once again, she turned around, “Honey, you’re alright. Your husband will be in soon to explain.” Ok, that was good news. Family was nearby. I could relax a little.
I would later recall my surgeon explaining that I’d have some short-term memory loss, and he wasn’t kidding. My mind was a blank slate. I remembered my three boys, my husband, my family, but could make no sense of what was happening to me. I continued to try to recall some horrible car wreck that I might have been injured in that would have led to this, but nothing came to mind.
A little while later, I remember seeing Laurant rounding the corner of the room I lay in. Tears immediately came to my eyes at the sight of him. What a relief to see his smiling face! Apparently, my husband also came, and in fact, spoke with me. I’m told he explained everything that happened to me in a few short minutes, but I don’t recall any of it. This was all happening in ICU the evening of my procedure. My parents also came in later, since there was a limit on the number of visitors, and they were only allowed a few short minutes. I only remember my father saying something about a hole in my head, and that it’s sealed up so now he can’t read my thoughts. Of course, this was his nervous attempt at humor. I’m told that I smiled when he said that, which was all the reassurance he needed to know that I’d be alright. Once everyone left, I fell asleep again, only to awake needing a container to, well, contain my nausea. I don’t remember anything after that until the following morning.
Day two at the hospital was a little better. The throbbing was still there, but I was well medicated, and had gotten lots of sleep. The staff brought me breakfast, and I was told to try to get out of bed and eat in the chair. This seemed like utter nonsense to me…..I was like a torso with spaghetti noodles for arms and legs. Nevertheless, nurses helped me in my journey from my bed to the adjoining chair. When I sat down for that first post-surgery breakfast, I reached for my fork, and found my right hand wasn’t cooperating. As I tried to hold the fork, my hand seemingly didn’t know what to do with it. It fell out of my hand twice. I stared at the thing in horror, simply stunned. I wasn’t going to allow that nonsense! I grabbed the fork with my left hand and placed it for the third time in my right hand properly, and began my slow, clumsy eating routine. It felt like I was trying to feed myself with a single chopstick, and I never learned how to eat with those to begin with. It took lots of effort to hold utensils, and I continued to drop them repeatedly. I feared what it might look like to hold a pen and actually write. Today, a little over three months after the procedure, I still struggle to write. My signature still only slightly resembles my old signature, and I generally write in printed block letters, except very slowly because I find the pen falling from my hands, or the letters become unrecognizable.
Nurses were available to meet my every need, because making even the slightest movement was excruciatingly difficult with all the effort it took. I remained in ICU the rest of the day into the third morning, while my body decided to play a cruel joke on me, urging me to urinate at least once every hour. I was so embarrassed to ask nurses to come to my aid every single time, but at least the toilet was also right next to my bed. I honestly lost all shame. By now, I couldn’t care who saw me do this, even if it was the 27th time today! That evening, Wednesday, I was moved from ICU into a new room. I don’t recall this specifically, but my husband later told me that it seemed like I toured the entire hospital in those few days, going from surgery to ICU, and then gradually stepping down to a regular recovery room.
I had visitors come by during my stay, both family and friends. As sweet as it was to have them, it was especially difficult in those first days. I never realized until then how much effort it takes for our brains to process what’s going on around us. Visitors meant lots of stimulation, and as much as I needed that, I felt like I could sleep for a week after each one. I craved peace and quiet, and would have preferred darkness to light. I couldn’t even have my room’s television on because it made my brain hurt to watch moving images on the screen. The surgeon eventually came in and pulled all the bandages from my head. He didn’t even use scissors, just pulled the thing right off. I was expecting something to come loose, some chunk of my head to become unglued, or at least a jolt of excruciating pain, but nothing. I reached up to feel my hair, and it felt like a string of fat wires, and they were all stuck together. It reminded me of those tight braids some people return with from exotic vacations, except my hair wasn’t braided. I had to see what I looked like. Once I was able to walk to my bathroom for a look in the mirror, I was shocked at what I saw. It was worse than anything I expected. Staring back at me was a pale, sagging face, and my head was sporting a bald spot decorated with a circle of staples which resembled a spider! It was honestly a cross between Frankenstein and Medusa! I needed to shower so badly, but was fearful of going at it alone, and I certainly didn’t want a staff member in the shower with me.
By that third morning, my memory returned, and I knew what happened and why. I was so grateful to be on this side of it all. One of my visitors was a friend, who is also an employee of the Clinic who works to rehabilitate patients with brain injuries. By the time she came, I was in much better spirits, and was grateful to chat with someone with knowledge of the recovery I was facing. She didn’t mince words when she expressed , “I hope you realize that car accident saved your life”. I did, and it was one of the more sobering parts of this whole experience.
Thursday finally came around, and my husband was bringing me home. What a beautiful experience, to leave the hospital, feeling that I had gotten a second chance at life. Returning home, I learned once again how special the people I am surrounded by really are. Several family members and friends visited and brought us food. Lots of delicious food. My family would be alright, and I knew I would be too.
Part VI
My two-week follow-up visit with the surgeon and his staff was almost like a sweet reunion for me. How grateful I was for this doctor who performed this delicate procedure on my brain. He explained that everything went very well during the surgery; however, my case was far more progressed than he already expected. The base of my ventricle was extremely floppy, due to stretching from the large amount of fluid. In some cases, the hole that he makes seals back up, and the cases where it does, are cases like mine. No shunt was inserted, as is done for some patients, mainly because of the many issues patients tend to have with it. However, should the need arise, it’s not out of the question in the future. That was difficult to hear. I’m not sure I’ll ever be ready to repeat this procedure, and the main reason is not the pain, the loss of motor skills, the financial hit. It’s the loss of memory I experienced. That was traumatic. As the doctor explained these things, the staples were quickly plucked from my head, and we left the office with an optimistic view on life.
Christmas and New Year’s were truly special in 2017. My husband’s love for me felt stronger than it had in our nearly 25 years of marriage. There was a palpable sense of relief in our sons’ eyes, as well as our parents’ faces. Our first outing as a family was to watch the newest Star Wars movie in 3D, which my son Mark purchased tickets for even before my diagnosis. He suggested that we postpone watching the movie, but I wanted to be present for everything now. We watched it at an early afternoon showing, which was great since I still tired easily in the evenings. Of course, I had to use headphones to block out the volume much of the time, and had to cover my eyes when the action was all too much for my brain to process, but it was still an awesome experience. As we left the movie theater, our family bumped into a friend who visited me in the hospital, and she was quite surprised to see us all out! Later, she expressed how sweet it was to see my ‘men’ surrounding me and to see the protective, yet relieved look on everyone’s faces. We were genuinely happy.
Three weeks after the procedure, I returned to work. It was January 2, 2018. This probably made me more uneasy than the surgery itself! Would I be able to perform my duties as I did before? Would I remember everything? Would my work progress at a snail’s pace? Would I lose my job because of my inadequate work performance? These concerns were all too real for me now. The first day, I was greeted by everyone like a hero. What a lovely experience to be welcomed back this way. I was even greeted by some who I didn’t even realize knew my name! Getting high five’s and hugs, and the genuine “welcome-backs” was such a delight. The first few days were exhausting, and I wasn’t the only one concerned about my performance, I knew my co-workers and supervisors were too. But everything came back quickly, and things normalized. I know some people do, but I never tire of people asking, “how are you really doing, Violet?” It gives me a chance to tell people a little of what I’ve gone through, and the blessings we experienced through it all.
Of course, I love to see the humor in it all. Since then, if anyone in my family finds me being clumsy, I always point to my head and remark, “brain surgery”. When one of my bosses asked about something I had overlooked, once he left the office, I immediately turned to a co-worker and remarked, “he does know I had brain surgery, right?” It’s an excuse that I’ll probably use in good humor for a while. I had someone say, “you’re still milking the brain surgery thing, aren’t you?” “Are you kidding? I’m just getting started!”
The question that I get asked most often is what caused this. My understanding is that this is most often a condition found in babies as a birth defect, or those 65 and older. I recently learned that Billy Graham had this same condition, and was treated for it in 2000, but he was 82 at the time. In people my age, late 30’s/early 40’s, it is likely caused by some type of head injury. This injury didn’t necessarily have to be as serious as a concussion, but a harder bump in a vulnerable spot on the head that caused even a few droplets of blood to get into the stream of spinal fluid. Those droplets of blood have a scarring effect on the inside of the ventricles, and as the body tries to heal those fine scars, a narrowing of the passage in the narrow channel which connects the third and fourth ventricles (called Aqueductal Stenosis) develops. The blockage that develops prevents free flow of the liquid between the ventricles in the brain, which leads to Normal Pressure Hydrocephalus (commonly known as Water on the Brain). If untreated, this can result in brain damage, loss of mental and physical abilities, and even death, although worsening symptoms lead to diagnosis and treatment in most cases nowadays. Now, I can honestly say I’ve had my share of bumps on the head. I recall a skiing incident, well before helmets were even recommended, where I fell and hurt the back of my head, but I didn’t consider it serious enough to merit medical attention. I’ve hit my head on multiple surfaces in our home simply from bending down and bumping my head on the counter above. The most serious head injury was from a fall I experienced, when I fell flat on my face slipping on black ice in a parking lot. I went from an upright position to an immediate face plant that happened so quickly that my hands didn’t even have a chance to go down before me. I shattered my nose, and had reconstructive surgery to correct the damage. That was in January of 2013. Based on the level of fluid build-up and the extent of damage to the base of my ventricle, it seems that this injury could likely have been the cause. The reality is that we will never really know.
Because hindsight is 20/20, I’ve recalled things that I noticed that should have told me something was awry. About a month before my diagnosis, I noticed that it was truly bothersome and distracting to have the radio on in my car while I drove. I simply couldn’t concentrate on the radio program and drive at the same time. One morning, I nearly mowed down some mailboxes with my minivan as I veered off the road while listening to a morning program. I immediately turned it off to exchange silence for better driving. My 20-minute commute from my workplace in the evening occasionally meant stopping for a cup of coffee, since by the end of the day, I felt incredibly drowsy after driving just a few minutes. Additionally, for several months before my diagnosis, I would occasionally e-mail my husband from work complaining that I found it nearly impossible to concentrate. This is particularly difficult to describe. How does one’s brain have to work extra hard to make otherwise simple connections?! I knew my job, and I took pride in the quality of my work. The best way I can describe the feeling is if you go to bed exhausted, and someone wakes you up at 2:00 a.m. and hands you an algebra problem. Your brain is not prepared to tackle such concepts without fully waking up first, having a cup (or two) of coffee, and trying to blink the exhaustion out of your eyes before trying to recall the order of operations. My everydays turned into a series of endless tasks that took far too long, and took such effort that it all became extremely exhausting. I turned to coffee, mint candies and gum, and occasionally I would drink a can of soda pop to try and jump-start my brain. But again, how was I to explain this oddity to a doctor and not have them stare at me blankly?
Of course, something like this will lead a person to become very aware of potential head injuries. Now, needless to say, I’m an advocate for proper headgear. However, how can a person be truly protected from unexpected injuries 24/7? It’s simply not possible. As prone to injuries as I am, I’d have to walk around with a football helmet every time I’m upright. At the end of class on a beautiful sunny day in the first grade, when I was rushing to get home, I walked into a concrete telephone pole, head first, so hard that I bounced back. The pain was excruciating, and that was before cell phones even existed! On another occasion, I distinctly recall walking home from school in the sixth grade when the large branch of a weeping willow tree came crashing down and landing just inches from my feet. I froze and saw my short life replay in my mind until I was finally able to compose myself and resume my walk home. The street crossing guard who saw this event from a short distance looked about as pale as I felt. So as much as I believe in keeping safety first, there are times when injuries are inevitable, and the time when they will creep up can be completely unpredictable.
I’m well aware of the question many ask, some verbally, while I know others just think it. The “why me?” question. Oh, I have definitely asked myself that, quite frequently, in fact. I see people around me who are so accomplished, so admirable for various reasons, with genuine servants’ hearts willing to go above and beyond to help others; and they fall ill and don’t recover. But for some reason, the Creator of the World considered me worth rescuing from this condition I didn’t even realize I had! I was dying….but didn’t know it. Why did He choose to rescue me?! It’s survivor’s guilt, and has humbled and brought me to my knees numerous times. So while my experience with Hydrocephalus has been an incredible and unexpected situation, I, and my family, are incredibly aware of what led to my unexpected diagnosis: a car accident. I will forever be grateful for the man who rear ended my minivan. God used this man in my life, and he didn’t even know it. While sitting around the dinner table the evening I was diagnosed, explaining my condition, and the surgery I was expected to have, my son Laurant’s eyes welled up in tears, and within minutes, he quoted a song by Laura Story, “What if your blessings come through rain drops; what if your healing comes through tears…that’s you, mom!” This, from a then nearly 14 year old mature young man. Yes. That is me. Ironically, the first time I heard this song play on the radio was while I was driving early one morning. As I heard the words, they brought me to tears, and I was surprised at how emotional I suddenly became. Years later, this sweet song’s words would calm and soothe my soul as we walked through some important trials in our lives. We all realized that our family was blessed by a car accident, and we learned that “the trials of this life are [His] mercies in disguise!”
Here’s the rest of the song:
Blessings by Laura Story
We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love is way too much to give us lesser things
‘Cause what if your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You’re near
What if trials of this life are Your mercies in disguise
We pray for wisdom
Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we’d have faith to believe
When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not our home
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
What if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise
Unexpected Journey 