Hello blog world! As I continued to recover from surgery, reapply to jobs, get hired, and work the last three months, I lost the thought entirely to continue to post on this blog. I hereby apologize and hopefully my small base of readers will remain loyal once this post reinvigorates interest. 

I was trying to think of the best topic for this post. In January, I was rehired at the hospital I’ve worked at for the last nine years, and am thrilled to be back. Although my recovery and outcome from my most recent surgery haven’t been exactly what I’d hoped, I’m managing to get through life with more ease and slightly less back pain. But I think what I’d really like to cover is the experience of being a patient versus being a healthcare worker. It’s dichotomous but, at the same time, eerily similar. Perhaps my experience has been especially colored by having been both employed and treated at the exact same hospital, but it makes for excellent and insightful comparison.

There is an exceptional video put out by The Mayo Clinic (https://www.youtube.com/watch?v=cDDWvj_q-o8) which exemplifies what it’s like to be a patient, an employee, but most importantly, a human. If I’ve learned anything working in healthcare and receiving a lot of healthcare, it’s that the human condition is universal. No matter what walk of life you come from or who you are, the fear and relief that medical care creates is dramatic and real. I have worked with Urologic patients, Oncology patients, Dermatologic patients, Ophthalmology patients and post-Emergency Department patients. Vulnerability is equal across all patients in healthcare. The difficult to navigate world of healthcare in America is treacherous and overwhelming for patients and employees alike.

Having been a patient in so many different specialties I now have a precious set of tools to use in my everyday career. I know what it’s like to wait months to see a specialist. It’s astonishing what it’s like to be told that what you’re experiencing can wait since it’s not “medically urgent” yet as a patient, it affects your functionality every single day. I know what it’s like to come close to having to move surgery even further out because the insurance has not authorized it in time. I know what it’s like to see staff come and go from their shifts while you live and recover in the hospital round the clock. And I know what it’s like to wait an hour past your appointment time, be forced to see the nurse, resident, and fellow before the “actual” doctor, and leave knowing you have four more tests, two blood draws, and a follow-up appointment in order to get a full treatment plan in place. Being a patient sometimes makes you feel like you’re drowning; you’re unable to take in all the people who are asking your name and DOB 50 times over. Every time I’m positive I’ve asked the doctor all my questions, I walk out and immediately realize I had one more. The process to then get in touch with your doctor, especially at a major hospital, feels endless. Someone will get a message to someone who will get a message to someone who works with the doctor. I must be triaged by the nurse first, then wait for a reply from the physician, and hope it clears everything up. My questions feel urgent, to be prioritized above all others. After all, can’t the doctor just answer my question quickly? It’ll only take them a minute! If the doctor could please just call in my refill, I wouldn’t have to wait so long to get the medication. Even after working at the hospital for nearly a decade, I can find myself becoming an impatient patient. Somehow when you’re on the waiting end of things, you feel a sense of frustration and drive to get what you need or want. Patient concerns, from a refill request to an emergency symptom, are valid, always. But let me flip the coin and explain the experience from the other side…

Most days when I walk into work there are over 100 new faxes and over 40 new referrals that came in overnight needing to be scheduled. When a patient calls very upset that we haven’t read over their faxed records yet, it sometimes feels impossible to know how to proceed with the conversation. I usually empathize that their symptoms must be scary, tiring, etc, but that hundreds of other patients had their records sent who feel the same sense of immediacy about getting in for an appointment. Sometimes phrases like “we try our best to get to these within 72 hours” just aren’t helpful, and I can understand that, I really can. But it’s also a true statement. Our staff works tirelessly to get to everyone as fast as humanly possible without compromising care and integrity. Triaging isn’t just for the Emergency Room. Outpatient clinics from Orthopedics to Hematology to Urology must triage all of the records, calls, and requests as well. Unfortunately, if it’s not life, limb, or sight threatening, it’s simply going to take more time than your average patient expects. All the employees taking phone calls must also call the patients to schedule who have been referred-routine, urgent, and emergency. Clinical staff go through every medication request, every test result, and every new symptom after a surgery with meticulous care. I try every day to remind our staff that they can do what they can do. You give each patient the best attention possible, but you cannot feel personally responsible for the emotional reaction patients will likely have about a delay in care. If you do what’s right by the patient, you will make sure each one gets the right treatment and attention regardless of how upset the patient might be. I usually impress upon employees that integrity is doing what is right even when no one is watching. I learned many years ago that the upset patient on the phone or at the front desk isn’t out to get me, Candice, personally. They are out to get help and guidance during perhaps the most frightening, painful, exasperating, sad, and hopeful time in their life. I often remind employees, as well, that you must walk a mile in another person’s shoes, many times a day, to be able to get perspective while doing your job. 

I have had patients accuse me of denying them care on purpose, get so close to my face I thought I might get hit, yell at me over the phone because I was the seventh person they were transferred to without getting help or even be informed they’d be transferred in the first place. I have had patients so lost in the hospital that I walked them 15 minutes out of my way to make sure they got to the right department, given patients my personal business card in case they ever needed help, even for something totally unrelated to my clinic, and helped patients who spoke no English to find peace and calm by getting to the right appointment on time, even if I had to go get them from the lobby outside myself. I have had patients who hugged me the first time we met simply for being so grateful for my help getting them an appointment or making sure their insurance coverage was good to go. I have had patients in good spirits who I spoke to on a Wednesday and died by Friday. I have had patients whose lives were saved because of transplants, research, trials, and just plain good doctoring. (Remember the nurse, resident, and fellow you “had to see first” before the “real” doctor?). It was during what the patient experienced as an “endless wait” when magic was taking place. All those minds together collaborated to create better treament. It’s just much easier to see it from the role of giving healthcare instead of receiving. And I have a handful of patients whom I’ll never forget and who have touched my life during their healthcare journey in the same way I hope I did for them. Last year, a patient for whom I’d taken notes during their appointment, sent me a personally written letter in the mail thanking me for helping them understand their treatment more clearly and ultimately feel less anxiety over what was going to happen. 

I’m not a nurse, doctor, technician, or anything clinical. I work in admin and leadership and I’m proud to do so every single day. The human condition is what connects us all. Patients and non-patients alike are, in the end, all vital cogs in the machine that makes healthcare, science, and miracles go round. I know what it’s like to walk in to 282 unscheduled patients needing care. And I know what it’s like to be one of the 282 patients waiting on a call to get that care. I’ve seen a lot of things in 10 years. And I still see things every day that shock me and challenge me, both as a patient and a leader. As that touching Mayo Clinic video asks, “If you could stand in someone else’s shoes…hear what they hear…see what they see…feel what they feel…would you treat them differently?”. 

-C

I’ve spent a long, long time thinking about how I should write this post. Discussing my experience with surgery comes fairly easily…except the piece which involves narcotic painkillers. For the purpose of this post, narcotics, painkillers, and opioids will be used interchangeably to mean prescription narcotic pain medication. 

Throughout my life I have had plenty of surgeries which required the use of narcotics to help manage the pain. As an adult I’ve had a tonsillectomy (arguably and surprisingly more painful than any surgery I’ve had), three anal fissure repairs, endoscopic sphenopalatine artery ligation, four rounds of PRK, TMJ arthrocentisis, and of course, two lumbar fusions. All of these came with a prescription for painkillers. Some of them I managed with just Tylenol or Advil, while some of them I can’t imagine having healed without the narcotics. But my personal relationship with narcotics is complex. I argue that opioids are one of the best things that medicine has to offer and simultaneously the worst. They are powerful, intimidating, scary, fun, miserable, elating, compelling, and oftentimes, necessary. The grip opioids end up having over so many people is astounding. I remain in awe of their power. Every single person should be in awe of their power. Opioids are not your chewable Flintstones vitamins, folks. If I’ve learned nothing else in my personal medical journey, it’s that using opioids deserves as much consideration as having the surgery or treatment in the first place. 

I have always had the propensity to experience every side effect possible with a drug, not just opioids. I’m always in that small percentage of people who get headaches, nausea, vomiting, blurred vision, and whatever else is listed on a medicine’s rap sheet. So you can imagine that I suffer the most intense side effects from intense medicines like painkillers. No matter what type of opioid, I always get the typical side effects first: extreme itching, utterly miserable sweating, constipation, grogginess. These happen the minute I start taking them, not just during withdrawal. The pain relief is wonderful, but those side effects make taking them nearly intolerable. But the part that terrifies me the most is how sublime they make my world. I am 100% someone who gets an immediate and notable high from painkillers. Once, in talking to my mom, I realized that not everyone feels this way on opioids. She was stunned to learn that I get a huge high whenever I take them. It’s difficult to articulate fully, but it’s a feeling of complete contentment. When I take narcotics I want to reach out to everyone I know and talk to them, tell them how well I’m doing, feel as though everything in my universe is at peace. Regardless of the painful surgery or procedure I’ve just had, somehow, with opioids, none of that matters. You float on air and walk on water. And that is why my high is also my low. Knowing you will crash from that high, and have to withdraw from that high is alarming. 

While in the hospital, they often give you IV painkillers for the first couple days. The rush of pain relief when they push the medication is rapid. You can feel the relaxation of it instantaneously, even before they’ve finished pushing the entire syringe. Even when you are able to switch to oral medication, within a short 15 minutes your pain begins to lessen. Let me be clear: These painkillers never make you pain free after a surgery like a lumbar fusion. In fact, the surgeon tells me the goal is to get you to the point where the pain is just bearable enough to function. But the high persists either way. However, once you start the post-operative period is when the clock starts counting down for the day you should be done with the opioids. In general, my surgeon recommends staying on the opioids for no more than two weeks after surgery. You see, the longer you take them the more likely you are to have a difficult time coming off of them. 

My lumbar fusion surgeries were two vastly different experiences regarding use of painkillers. Despite being a veteran at medical care and surgical intervention, I realize now that I had almost no appropriate knowledge of how to manage my narcotic use after such a major surgery. I didn’t talk with the surgeon ahead of time about when I should come off the narcotics, how long to taper them, other medicines that might ease the withdrawal process, etc. I thought I was savvy enough to figure it all out myself. But I didn’t. Instead of recognizing that I no longer needed the painkillers I kept taking them long past when I medically needed them for pain control. I’m not even sure it was a matter of recognition so much as admission. I had trouble admitting that I could be using Tylenol at a certain point. I liked the buzz I felt as I drifted off to sleep after taking the opioids. I liked knowing that the calm was coming as my next dose approached. But six weeks after surgery I realized I was in too deep. Although I was well informed enough to know I needed to taper the painkillers rather than stop cold turkey (never ever stop cold turkey), I didn’t know the appropriate schedule for tapering. In the span of only 7-10 days or so I tried to taper off a month and a half’s worth of habit. My psychologist has explained to me that when you take away a substance like narcotics which your brain has become reliant on, it starts to panic. The chemical dependency begins to sabotage your own body and mind in a desperate plea to get you to keep taking the medicine. Your brain tries every way it can to show you that without continuing the opioid your life will be horrific. Sweating, insomnia, anger, vomiting, nausea, weakness, restlessness, and worst of all deep, all-consuming depression and cataclysmic anxiety. I’ve experienced clinical depression and dreadful anxiety before in my life. It’s practically demonic. But something about the mental health effects withdrawing from opioids creates is unimaginable. During that withdrawal period after my first lumbar fusion I was sick, very sick. In truth, I should have gone to the ER. I reached a point where I was having delusions. I physically couldn’t sit still. And I often thought I might need to end my life to escape the nightmare (that’s actually part of what your brain tells you to convince you into taking the pills again). God bless my mother for helping see me through that dark period of despair. It was clear I had mishandled the use of opioids and the attempt to escape them. Eventually, all the symptoms of withdrawal vanished. Sometimes I look back and very sincerely wonder how I made it through alive. 

But there’s another piece to all of this that needs addressing. The medical community is just as culpable as the patient in understanding the right path to walk while needing to use narcotic medication. Why was the suggestion for how long I should stay on the painkillers not in my pre-op paperwork? Why did the nurse or physician not go over that information when I was discharged from the hospital? Where was any contact information for me to call when I was suffering so immensely? I’ve worked in healthcare for my entire career. If I can barely make it through using narcotics I don’t expect your average patient to make it through at all. There’s a reason this country has an opioid epidemic. Among many reasons, patients are not educated enough to manage painkillers properly. For medicines that alter your entire brain chemistry, patients need clearer, much more intensive instruction beforehand. I honestly believe it’s the fact that I experience icky side effects along with the high from narcotics that has saved me from becoming addicted. I can absolutely see how one could attempt to get off the painkillers, feel the loss of the high, and begin nasty withdrawal symptoms and simply say “never mind, this is too hard, I’d rather continue that blissful existence where I don’t get these symptoms”. I don’t personally blame my surgeon or any of the other medical professionals who have been involved in my care. But I do blame the system as a whole. Everyone I reached out to for help insisted on passing the buck. Called my surgeon’s office? “I don’t know, it’s up to you if you want more pain medicine. Otherwise you can talk to your PCP”. The PCP’s office? “We didn’t perform the surgery, you need to talk to your surgeon’s office”. The Pain Management Clinic? “We don’t deal with prescription pain management, just alternative methods”. To feel like the ER is the only place I could get help just isn’t right. There must be progress in creating a defined process for the use of narcotics. I even asked my surgeon ahead of both surgeries whether I could do it without painkillers. He stopped, looked at me very seriously, and said “I’ve only had a couple people do it without. It’s absolutely horrifying and you really don’t want to do that unless you have to”. I believe him fully. Even with the narcotics the pain after my spine surgeries was unfathomable. But that doesn’t mean patients should have to self-navigate and feel alone. I hope the medical community continues to revise how narcotics are prescribed and used. They are one of the best ways to help patients in immense and acute pain. But they are one of the worst tools once in unskilled hands. 

This time around, for my second lumbar surgery, I marched into my pre-op appointment with a million questions in hand. I talked with my surgeon at length regarding my fears and needs about opioids. I told him I was either walking out of the appointment with a plan for use and tapering off or I was postponing the surgery until that plan could come to fruition. My surgeon is wonderful. He sat and listened to every single question I threw at him. He was clear in how long I should stay on the painkillers and to call him personally with concerns. But what if I hadn’t been such an advocate for myself? Would I have ended up in the same mess as last time? I implore all people who might need to use narcotics to be the best advocate for your care that you can. There truly are no stupid questions. If you don’t have a plan ahead of time, you should wait to have the surgery until you do. Your body and mind are too important. Your life and future are too important. 

I can proudly say I was only on narcotics for one week after this second lumbar fusion. I quickly moved to Tylenol and tapered off on a schedule I found doing research through the Canadian CDC, of all places. Because it’s me, and my body’s MO is to make things as difficult as possible, I still had bad withdrawal symptoms. However, I made it through and the side effects were at least noticeably better than the first lumbar fusion recovery. I respect the power of opioids from a distance. I hope I never have to take them again. I was close to not having this second lumbar fusion for the sole reason that I was sure I couldn’t go through withdrawal again. Although I made the right choice, and handled the painkillers much more seriously this time, it was one of the hardest choices I’ve had to make. When something is so powerfully good, be cautious of the flipside of that coin. Make sure you don’t cross the line from helpful to harmful. No high is worth falling down a rabbit hole you didn’t get the tools to climb out of beforehand.

No bending, no lifting, no twisting. No bending, no lifting, no twisting. For the past three weeks this mantra has been circling my brain like a shark around prey. It’s the “BLTs” of back surgery recovery (the medical community is obsessed with their acronyms). These are my restrictions for a minimum of six weeks. These rules may seem benign and fairly easy to follow but I’m here to tell you that you don’t realize how often you bend, lift, and twist for everything in your life, all day, every day. For someone who lives alone, these restrictions are a hindrance at every turn. I’m past the point where I need someone with me 24 hours/day. I can’t possibly justify asking a parent or friend to be here at all times in case I drop something in the kitchen or the bedroom (both of which I did yesterday). However, let me share with you some of the ongoing litany of tasks which feel impossible. Some of these even cross off some or all of the restrictions in one go:

1. Taking out the trash (that’s bending and lifting, for example!)
2. Replacing the trash bag
3. Getting something off the bottom shelf of the fridge
4. Changing the cat’s food and water
5. Changing the cat’s litter
6. Turning to change the temperature in the shower
7. Bending to get a product off the side of your tub
8. Drying yourself after the shower
9. Unloading and loading the dishwasher
10. Plugging and unplugging things into the wall
11. Doing laundry
12. Lifting up the toilet lid
13. Spitting in the sink after brushing your teeth

The current state of things is a perfect example of those moments where I feel the loneliness of not having a partner set in. If only I could find my significant other, my other half, he would be able to walk in the door and help me sweep up all the Kix cereal I spilled on the floor or open the oven and take the pizza out. Instead, I find myself picking up each individual piece of Kix with one of the elderly person “claws” designed to help reach objects difficult from someone older. Have you any idea how tedious it is to pick up individual pieces of Kix with a relatively giant clamping device? In a sick way, I’m proud of how skilled I became at the task, but that’s beside the point. And I certainly am not enjoying the new burn on my left arm attempting to take the pizza out of the oven sideways while squatting. I encourage every one of you to take just one hour tomorrow during your regular day and put the bending, lifting, twisting restrictions on yourself. I think you’ll be surprised at how frequently you need to use those movements. And remember, all bending, lifting, and twisting counts. You can’t just quickly bend to grab your purse off the floor. You can’t twist to grab a new roll of toilet paper from behind you on the back of the toilet. And you most definitely can’t lift your dog up for kissing and cuddling. 

And so on, and so on…..

Even though my quads are going to be in great shape by the end of this recovery from all the squatting, I’m not sure my love life will be. Experiences like major, restrictive surgery and recovery often highlight my current station in life. I try diligently to take into account all the things that DO fill my life, but some voids cannot be filled by other things. Trying to fill a lack of partnership and romantic love with friends or family is like trying to fit a round peg into a square hole. I have many, many components of my life for which I am very proud and fulfilled. But, over the last five years being alone has only gained momentum as a constant source of sadness. On the whole, I actually love living alone. It’s difficult for me to imagine what sharing a space will be like again one day. I haven’t had a roommate since college, and as I’ve said to all the people in my life, I’m not having another one until it’s a husband. However, in my post-surgery haze, being the only human being in the house is rough. It was rough the first time around and proves to be just as much so this second go round. I’m eternally grateful for the help and support my friends and family have provided me thus far. I’m so happy I have plenty of people in my life who care and will drop what they’re doing to come to my rescue. But wouldn’t it be nice to have that partner in crime available for not only emotional support, but also to help me shave my legs and put on pants? I bet you forgot that shaving and putting on pants are part of the forbidden BLT activities. 

It’s impossible to know when and if this void in my life will change. As the physical gets easier, and my current restrictions are lifted in a few weeks, I can only hope that my solitude in life will be lifted too. There have been a couple bright sparks in recent months that still make my dream of meeting my best friend for life feel like a possibility. Even if those sparks aren’t my permanent match, I have been somewhat reinvigorated by my desire to make meeting someone and get married a reality. Hopefully soon I can “twist a little closer now” to my goals of love and companionship. I will keep getting healthier and I will keep that Beatles classic on the playlist for my wedding reception. 

-C

I wanted to share a post I wrote for just myself in January of 2020 while recovering from my original fusion surgery. It will hopefully give you a glimpse into the power and importance of love and relationships in my life while also referencing some scary experiences caused by narcotic withdrawal; both are topics I will continue to explore in my future posts. 

(originally written 1/24/20) 

What’s love got to do with it?

I landed right in the middle of my parents when it comes to how I keep my home. I am decidedly not a hoarder and never will be (hi dad). But I have clutter, sometimes keep things around far past the point of utility, and you’ll never see every surface cleared at the same time (hi mom). There are times I wish I had the power to line everything up perfectly and cull the unnecessary on a regular basis. But for this post, I am grateful to have the compulsion to keep things in my life that have deep sentimental value. 

If you go to the top shelf of my guest room closet, all the way to the far right is a large, white, silky cover bag that came bearing a Coach purse at some point. Many years ago I repurposed this cover to become the “ex-boyfriend bag”. Only two guys have the honor of being included in this collection of memories and I’d like to discuss one of them in this post. My anxiety has been rearing its ugly head in recent weeks with a flood of flashbacks and often endless thoughts of the first person I ever loved. On the whole, I actually don’t really think of him all that often. But being in a vulnerable state post-surgery, alone at home trying to fill the abyss, places my mind in a precarious spot, one that leaves my brain susceptible to the rabbithole of my first truly long term relationship.  

I met James on the bus home from high school during our freshman year in 2004. Both fourteen at the time, I certainly felt old enough to be flirtatious and a little cynical with this extra tall, cute boy. After discovering that the majority of my high school population came from politically conservative, George W. Bush loving homes, I immediately assumed James was being facetious in describing his parents’ liberal stance and households both registered Democrat. But, to my surprise, he was sincere. I felt a small wave of relief after having been questioned by many classmates who had clearly never met anyone outside their circle of beliefs. I quickly learned that James’s parents were also both lawyers. I even questioned his truthfulness again when he told me his father practiced water law. Now really, raise your hand if you already knew that type of law was actually a thing. 

By the time spring of our sophomore year rolled around in 2006, and a few classes together later, I pretended to call James one night for help with math homework. Don’t get me wrong, I am positive I actually needed the help, and bless his heart for seeing me through AP Calculus our senior year, but this call was a foil for a different agenda. It’s funny the things that stick out in our lives and minds clear as day. I can remember that phone conversation like it happened last Wednesday, not fifteen years ago. I finally blurted out “I’m into you” (making the first move is still a trait I possess today, and I’m quite proud of it, because believe me, it takes a lot of bravery). His response before we hung up the phone was “well, let’s give it a shot”. In the six years of dating that followed he and I would often joke about that call. What does giving it a “shot” even mean in tenth grade? We both showed up to class the next day (Honors Algebra II of course) uncertain of what was taking place. I purposefully wore what James would later tell me he deemed my “tennis outfit”, which included a white miniskirt, a dark blue polo, and a flat stomach I might miss even more than James to this day. We made fleeting glances at each other from our desks, and smirks that I’m sure were equally cute and revolting to others. 

And so, one of the most meaningful relationships of my life thus far was off to a great start. He and I experienced so many firsts together. That spring and summer we turned sixteen and got our driver’s licenses. We learned that our mothers already knew each other through their legal professions. His mother actually called my mom before the first time I came over to their house to make sure my mother was comfortable with the plan. Back then I was mortified. But now? I thank Nora for being the kind of mother and woman caring enough to make sure I was safe. We attended homecoming both junior and senior years as well as both proms together. What began as an anxious phone call from his mother quickly turned into me using his house as my second home. Everything about having a new relationship and especially one in which you get to grow into adulthood with the other person, made me fulfilled in ways I was learning would also be important to me. When you reach milestones alongside a partner, you begin to evaluate the parts of life that will be most critical to you as an adult. Having James taught me that someone I loved and who loved me so closely would frequently need to come first in my life.  

James was an exceptional person in a myriad of ways. He is wickedly smart and has a brain for the areas in which I struggle most. That went both directions. He could do physics in his head in seconds but often asked me to proofread his papers or help him with spelling and grammar. James was uncommonly funny. His sense of humor was, and I’m sure still is, one of his most valuable traits. He was just as dorky as me, which I adored. And his heart held so much kindness and so much patience. I always admired that about him. All in all, he is one of the most decent human beings I’ve had the pleasure of knowing. And above all else, he was my best friend. As I write this post which is exceptionally long winded, like a marathon down memory lane, I can say with confidence he is the closest friend I have ever had in my life. I can also say it’s the one component I actively miss in my life even now. It may sound cheesy, but James is a rare find, a diamond among rocks and imposter gems. I would be lying if I said I hope he’s single and miserable. Despite some bitterness, I hope he has found happiness and everything he deserves. 

The summer after high school I fell into a deep depression. It was and still is the sickest I have ever been. I quit my summer job, and reached the point where I was unable to leave the house or feel safe alone. James stood by me, unwavering, during the most difficult experience I have endured. My life changed dramatically. I had to abandon my dream of going out of state to college, enroll at my state university, and hope to God that the amount of treatment to which I dedicated my existence would all eventually be worth a healthy mind. James was already enrolled at the same school under their engineering program. That first year we lived just one dorm away from one another. Despite his need to make friends and branch out, James dedicated his friendship and love to me in a way that’s hard to articulate. I didn’t appreciate at the time that James probably needed more space to find his own footing, but I am forever thankful for his deliberate presence to help see me through the lowest point I’ve yet faced. 

There were plenty of good memories as time went on during our college careers. We went on spring break trips to Mexico and Europe. We always found time for dates and exploration of our new city. And that boy drove me home every single Sunday night for dinner with his parents and mine. But as the semesters of college were flying by, I knew by the beginning of junior year that our paths were beginning to diverge. It wasn’t something I could admit at the time and, in fact, took years of processing and therapy to recognize. Hindsight really is 20/20 I suppose. Although at times I questioned whether I needed to date other people before marrying James, I always ended up in the same place-I could never see a world in which we didn’t end up together. But James did see a world apart from each other. As I pushed to talk about more commitment like moving in together senior year or planning around wherever he ended up getting into law school, James became distant and ultimately a coward. I have since learned and practiced diligently more kindness and less bullying on my part in relationships. However, James was terrified to actually bring himself to break up with me. Instead, he spent about a year acting ruder and ruder. He would blow off phone calls and texts, afterwards making me feel like I had done something wrong and clingy by just trying to get in touch. My heart was sinking. Intellectually I knew what was happening, but emotionally I couldn’t accept it. At one point, James was creating a closer relationship with his friend Erin than his relationship with me. I always felt she was wildly disrespectful of our relationship to begin with. It was obvious she had feelings for him, and as it turns out, James developed feelings for her. After we broke up, he dated that awful girl for three years. Sometimes I still feel I’m owed an apology from him for treating me as disposable at the very end, but we all make mistakes.

And then it finally happened. In the fall of 2011, we had gone out to dinner at California Pizza Kitchen one weeknight. I drove, in an unusual break from the norm. On the way home the subject of the future came up like the elephant in the room that had been present for the last year. I finally pulled up to his house and we sat there in the car, in the dark, watching something so meaningful implode in slow motion. I simply asked him “I need to know if you can commit to getting engaged after college?”. He hesitated for a moment and then quietly responded “No”. “Then this is over, James. This relationship is over”. I was as shocked by the words coming out of my mouth as he was. Something in that moment had shifted. Deep within my heart I summoned the courage to finally treat myself as an equal. No matter how painful this was going to be, and believe me, it was agonizing, I knew in that moment he was never going to give me what I needed and what I deserved. Another memory still clear as day, he looked at me with petrified eyes and said “Candice, don’t”. It’s something that reminds me to this day that although he was ready to move on, it was still a massive loss for him too. He slowly got out of the car, we each said goodbye, and that was it. It was over. We were over. 

We spent the entire rest of our senior year in a mess. Our break up was real, but I often reached out to him, begging him to come over or see me. Because we were BOTH clueless and selfish, he took me up on those requests far too often. It’s not as important how I managed to unwind myself out of the thick of it, but it was arguably the most arduous journey I had to complete to find a life again. The tears roll down my face even now as I write this post. To my left are some of the memories I kept all these years, freshly pulled out of the ex-boyfriend bag: a Lady and the Tramp themed six month anniversary card. A Valentine’s Day card to remind me of our tradition of exchanging a book every February 14th. The movie stubs from Tropic Thunder, The Simpsons Movie, Get Smart, and Saw V. His mother’s wedding invitation from when she remarried our senior year of high school. An actual printed photo from my 16th formalwear birthday party. A postcard from Monaco to tell me he loves me and he knows how sick I am with depression, but I’m strong enough to endure. A faded Delta Airlines ticket from a college spring break trip to Puerto Vallarta. A map of Paris from another spoiled spring break trip to Europe. 

I’ve only spoken with or seen him a handful of times over the last decade. It’s too much for either of us, I think, to ever be friends or talk regularly. That isn’t how our story was supposed to go. I know that he lives in Washington D.C, working as a patent lawyer (a dream he was on a mission to accomplish for as long as I can remember). I know that he was seeing a woman from Chantilly, VA for a while. At least that’s what he told my dad when they ran into each other at the store a few years ago. [And now (in present day of 2021), through the grapevine, I believe him to be engaged to his most recent girlfriend].  I’m not sure how often, if ever, he thinks about me. I don’t know if he knows what I do for work or where I live. ***The last time I reached out to him was this past summer. During another deep, despairing depressive episode I texted him for any advice he could remember from my worst summer eleven years prior. He never responded. I can’t say I’m surprised…I’m honestly not sure I would respond if the roles were reversed. There’s a lot of history and baggage there. And ultimately, we are now different people. The James stuck in my head is outdated and likely wouldn’t match the James of 2020. The same goes for his vision of me. I have only memories now, the fantasy of what might have been. 

Now that I have told my James story and placed the keepsakes back in their bag tucked away in the closet, I am able to find some sense of calm. My anxiety and sadness ebbs and flows with memories of him, and always has. I’m sure I’ll find myself at the peak of a wave, in tears again at some point. But telling this story, reliving history for just a few moments, makes me realize how much I’ve learned and how vastly I’ve grown over the last decade. I kept my promise to treat future relationships with kindness, respect, and most of all, patience. After James, I taught myself to prioritize friendships as much as romantic relationships. And despite how lonely I feel in my life right now and in the past couple years, I wouldn’t trade my memories and time with James for anything. As my mom always reminds me, how lucky am I to have had such a meaningful relationship so early in my life? I got to have something innately wonderful and incredibly connective. Learning to drive, turning eighteen, graduating highschool, and all the other important firsts during your formative years, I was graced with a true best friend. Thank you, James. I will always be grateful for everything you taught me and in all the ways I changed for the better because of your presence. I can only hope you hold a special “Can” (as he used to call me) place in your heart too. 

A good cry, from your gut, is sometimes the only way to make sure you’re in touch with your needs. I will always have love for James, but I am certainly past James. I don’t know the next time I’ll make another trip to the top of the guest room closet, but just knowing it’s there is invaluable…exactly like everything I gained from the boy on the bus. 

Foof,

-C

***Please note that shortly after I wrote this post, I actually called James a few nights later while very mentally ill/unstable from coming off the narcotic painkiller I was on from my L4/L5 fusion surgery. To James’s credit, although he did not answer my call, he immediately called my mom relaying my distressing voicemail to make sure someone could make sure I was ok. Thank you, James. 

There is a phenomenon in the human condition where the brain purposefully suppresses or “forgets” the trauma or physical pain of an event. If we let our brains remember the exact sensations of a painful experience just by thinking about it, then we would never engage in those types of experiences again, even when necessary, i.e.-child birth, surgery, etc. 

I knew how painful a lumbar fusion is. Read: KNEW-past tense. I spent the last 1.5 years trying to process the stress and trauma of my L4/L5 fusion. The inpatient recovery was excruciating. Unfortunately the only bed available the night of my surgery was on a regular med floor. This means that instead of getting the nurses, MAs, CNAs, etc who understood the nuances of a neuro surgery or appropriate pain management, I got care from a more generalized set of medical professionals who don’t often deal with neurosurgeries. It was pure hell. I spent the first two nights with woefully inadequate decision making regarding which pain meds I should be taking. The nurses seemed confused and uncertain. At one point the overnight nurse asked me which IV I wanted my medication in (I had one in each arm). I said “I guess this one” pointing to my left arm. She replied “that one seems pretty irritated”. “Ok”, I said, “then you tell me which arm, you’re the nurse”. Without much thought, she went ahead and put it in my left arm anyway. It was extremely painful. The intense burning sensation along with a puffy, swollen, greenish appearance told me this IV needs to be taken out. But I shouldn’t have had to be the one to determine that. Ultimately, the medical staff should pay close attention and monitor when something like an IV needs removal or changing. I was deeply unhappy with that nurse’s care and asked to speak with the Charge Nurse. The Charge Nurse came in, asked me what my concerns were, and then stepped a few feet away to speak with my nurse. I distinctly heard my nurse say “she MADE me put the medicine in her left arm”. I went ballistic (well, as ballistic as one can get on heavy pain medication, post-major surgery, at 3:00am in a hospital bed). It was clear to me the nurse thought I was too out of it to catch or respond to her comment, as she was genuinely surprised when I said loudly, “I did not MAKE you do anything. YOU are the professional medical staff and YOU are the one who made the decision to use my left arm. Do not tell the Charge Nurse something entirely false”. Although she immediately tried to retract her statement, stumbling on her words, “I didn’t mean you made me, I just meant, uh, I…”, it didn’t matter. It was obvious I wasn’t getting appropriate care on any level.

All of this culminated in a fiasco the next afternoon when both of my IVs had required removal and not one nurse on the floor could get a new one in. With my mother present, one of the nurses announced “we need to wait for the IV specialist from radiology. She might not be available until tomorrow”. My mother lost it. She had watched my care decline and my pain become insufferable. I was actively prescribed IV pain medication and the nurse acted as though waiting to have any of the medication until tomorrow was no big deal. It’s not entirely clear to me the sequence of events, but somehow in her (justified) rage, my mom was able to get the neuro team to come rescue me. I do vividly remember the part where two neuro floor nurses came in, stated “we’re taking her”, and pushed my bed out the door without another word. The med floor nursing staff stood in shock as I was whisked down the hall. Now, I’m not one to make a scene or big fuss even when I am in a lot of pain or discomfort. However, even I couldn’t control the reaction to how much affliction I was experiencing as the blurry hallway went racing by in my peripheral vision. I was actively moaning out loud and unable to lay still. They quickly got me to the tiniest hospital room I have ever seen, but thank the Lord, I was finally in the neuro unit. Two nurses worked to put the brakes on my bed, and prep some sort of strong narcotic pain medication. The specialty IV nurse from radiology, unavailable until the next day, magically appeared at my bedside. My mom watched in agony as one nurse held my legs, one nurse held the syringe with the painkiller as close as humanly possible to my vein, and the specialty IV nurse yelled “Candice, I know you are in a lot of pain, but you must keep still and you must do it now!”. I have never seen an IV go in so quickly and the push of medicine as soon as the needle and catheter hit the vein. A rush of relief came over me in a way I can’t quite put into words. It still amazes and scares me to this day how powerful narcotic drugs are. I’ll get to the seriousness of opioids in another post where I discuss coming off them. My switch to the neuro unit literally turned my care around 180. By the next morning my pain was under control, I was being looked after meticulously. To everyone’s surprise, I was actually ready for discharge by that afternoon. 

Fast forward to 7/22/21. One day after my L5/S1 fusion surgery and I lay in “bed” (I can’t bring myself to give that hospital issue plastic mat the designation of actual bed) and things were under excellent control. After advocating many, many times (thanks, Mom) that I needed to be on the neuro floor, that is indeed where I ended up. Even with appropriate care and pain management, it hit me like a freight train all over again: Pain management and pain free are two very different things. If you’ve never experienced something like a lumbar fusion it’s very difficult to describe the type of post-op torture you feel trying to move even one or two inches. They cut through the muscles in my back, put in all the hardware, and sutured things back together. I had completely forgotten that the point of pain medication was to get you to the very edge of tolerable. There were moments I thought that sitting up, or rolling over, or trying to scoot a few inches to the right would actually kill me, or at least cause me to pass out. The pain is so searing it takes your breath away. I would use all the upper body strength I had in addition to pulling on the rails of the bed so hard I was certain it would break in order to remember that I HAD to go to the bathroom, I couldn’t just hold it in. Certainly the second and third day after surgery are the worst. That first day tricks you. You still have anesthesia and the numbing agents they used during surgery along with the narcotics. You think, “hey, this time it’s not so bad”. But when day two and three set in, it comes flooding back. The whole part where I KNEW how painful a lumbar fusion is had been tucked away deep in the recesses of my brain. 

It’s funny how the human body works. It has a lot of measures in place to self-preserve and protect. If I could conjure up the physical feelings and memories of that pain from my first surgery, I’m honestly not sure I could have gone through with it again. I’m eternally grateful I got great care this time from the right team of specialists. But I’m especially thankful for suppressed memories. May they forever remain in the Pandora’s box of my mind locked tight. 

-C

It’s the last Sunday before the big day. In just two short days I’ll wake up in the morning, drive to my venue, put on that gown, and smile at my parents as they watch one of the most important days of my life…the day I have an L5/S1 lumbar fusion surgery, obviously. 

My name is Candice. I’m 31, single, and about to have my second lumbar fusion in less than two years. So far, my life hasn’t gone according to the plan. I realize having a “plan” is laughable. No one gets to pick the exact course of their life. I believe that when things come together what feels like control as the driving factor was mostly just luck. Of course we all make decisions, efforts, and steps in our lives to help nudge things in a particular direction. But, let’s be honest. Most of life is going with the flow of the unknown river you’ve been placed on. You get a paddle to try and steer around rocks and other hazards, but in truth it’s the current, the rapids, the sharp turns that shape our lives the most; those elements over which we have no control. And so I sit here, very late on Sunday night, July 18th, 2021, absolutely terrified for the next whitewater obstacle I’m expected to navigate. 

In December of 2019 I had an L4/L5 lumbar fusion. After spending most of my 20s in increasing pain and inability to function like a normal, young person, I, along with my doctors, decided that the last chance to regain my most basic daily living would be to undergo surgery. Nobody expects to have a major, life changing surgery like this at age 29. However, it had to happen. So on December 16th, 2019, I made the best choice of my life and went ahead with my first lumbar fusion. Recovery was excruciating. I was in the midst of battling with a deep depression prior to surgery, and that, in combination with coming off the narcotic pain killers, was one of the scariest experiences I’ve gone through. However, I made it to the other side. I went back to work just a few short weeks before COVID truly set in. On a Friday in mid-March my surgeon finally cleared me for all activities. I had a whole list: kickboxing classes, join an adult soccer league, tap dance classes, get back in my figure skates and step out onto the ice. And suddenly the pain free freedom I had waited so long for was stopped in its tracks. COVID shut down everything that following Monday. The list I had made on my phone full of goals for activities was halted. Trapped as just a dream until further notice, I wasn’t able to test out my new body. The surgery had been a rousing success. I wanted to go to the movies and out to dinner. Afterall, I could actually sit now for the length of a meal without having to leave early to go home and lay down! I wanted to try all the sports and classes I’d watched get stripped away from my life slowly over the last decade. 

Despite having to put a lot of activities on hold, I was still gifted my life back. I could walk, sit, stand, go to work, lean over the sink to spit after brushing my teeth, pick up my purse off the floor, and even reach over to flush the toilet without having to hold on to the counter first. Imagine how bad things must have been for me to jump for joy over the fact that I could now actually sneeze properly again without fear that I would throw my back out leaving me to crawl to the bathroom on all fours. Things I used to take for granted had now been returned to me and I would never take them for granted again. Having my body back was like going back in time to the age I really was. Suddenly my age, my mind, and my body all matched. Things were aligning as they should have been all along. My world no longer revolved around whether my back could tolerate any given activity. I worked exceptionally hard at PT and was simply waiting for COVID to lift and get me to the final list of goals. 

In October of 2020, with COVID restrictions still hanging over everyone’s heads, I had sudden nerve pain down my left thigh. It came on out of the clear blue on a Sunday night. I didn’t think much of it until, within the week, it was impacting my ability to walk without a significant limp. Coworkers were concerned, asking if I’d injured myself. After a trip to my PCP, I came full circle back to the Spine Center. Meeting with a rehab physician, with the assumption this was a problem stemming from my surgical site, I was shocked to hear the problem was actually coming from one level down at L5/S1. When the doctor told me that I immediately burst into tears. No way. That can’t be true. I can’t have ANOTHER disc problem. Assured that this was almost certainly going to resolve on its own, I was skeptical, but went on my way. By December, the nerve pain and leg weakness had indeed resolved. I saw my surgeon for my year follow up, thanked him in tears for giving me my life back, and was officially discharged from his care. As you might imagine, the story didn’t get wrapped up in a bow all neat and tidy. In January I had what I call a “nerve episode”. I experienced such severe nerve pain all the way down my left leg that I strongly considered going to the ER or calling 911. Although I was able to suffer through it doing all I could (Tylenol, Advil, heat, ice, changing positions, taking hot baths, lidocaine patches, etc), I ended up needing a steroid injection in the L5/S1 problem area. The doctor told me this was unusual to have such a bad flare up after the initial problem seemed to have resolved on its own, but he was still adamant it would be very unusual for this to get to the point of another major surgery. I’ll spare you the next six months and skip to the part we all know. With all other treatment options exhausted and failed, I spent another sob filled doctor’s appointment back with my surgeon giving me the news: an L5/S1 fusion is our only choice at this juncture. 

And you are now caught up to present day. There are plenty of details I left out for the sake of (attempted) brevity, and I’m happy to elaborate on anything in the future. This blog post opens with a joke about marriage. Instead of a white wedding gown, I will be putting on a standard issue hospital gown, front to back, and waving goodbye to my parents as I’m wheeled off into the operating room…a far cry from being driven off to my honeymoon in Bora Bora. This blog is meant to express how different my life looks from how I imagined and hoped it would be by now. It’s also meant to help others in similar struggles. For now, the blog will concentrate on my surgery and the recovery process. When I had my first surgery, it was difficult to find posts from young people who’d gone through the same experience. I vowed if I ever had to do this again that I would blog about the whole process. If this helps just one, young person facing this same medical life step, then it’s worth it to write about my own experience. 

There will be plenty of time to write about why my 30s don’t look anything like the previous generation’s, and not just because I’ve had two major surgeries at such a young age. I hope to cover dating, career decisions, other health struggles, moving away from home, managing feelings of loneliness, losing friends and making new ones, and so many other items. My hope is that I can create content that’s accessible and relatable. I certainly have plenty of topics stockpiled, and a lot of free time coming up in the 2 months of immediate recovery. Because, after all, this isn’t your mother’s 30s. 

-C