As a nurse, some of the best and worst patients I’ve ever had are health care providers. Sure, I’ve taken care of psychotic people who threaten my safety and sanity, CEOs and celebrities who want to be pampered endlessly, patients with undiagnosed Munchausen’s, and enough other horrible patients to fill a book. Yet by far, the most difficult are health care providers – nurses, doctors, pharmacists, etc.
At their best, health care providers can describe their symptoms in a helpful manner, provide thorough past medical histories, and actually know what medications they take (and when they took them last). The greatest ones will teach you what they know, be patient, hold their tongue as you perform skills differently than they would, and bring the staff treats (because they know how hungry they are all the time at work too).
At their worst, health care providers are controlling, manipulative, watching your every move in a manner that you are worried about getting sued, do not listen to their own health care providers’ advice, stubborn, and downright rude.
As a nurse, I’ve taken care of health care providers as patients, for better or for worse. But regardless of their behavior, all health care provider patients have one thing in common: their body has failed them.
The thing that makes health care provider patients the most difficult is not their behavior but the stark reality that no matter how well you know the body, the body is going to fail you. It’s hard seeing a health care provider struggling to be a patient because I know that’s going to be me someday too. I can hope I understand my body so well that nothing detrimental will ever happen to me, but the reality is my body will fail.
In 2015, it did.
St. Patricks Day 2015, I had hoped to meet up with a co-worker, enjoy some green beer, and commiserate about the frustrations of being on orientation at a new job. My hopes would soon be dashed in many ways starting that day.
I woke up early St. Patrick’s Day morning with a sharp, stabbing 8/10 pain in the right lower quadrant of my abdomen.
- A quick note about pain: We health care providers use a 10-point scale to describe pain, 0 being nothing and 10 being the worst you can imagine. Patients of mine can describe a sore throat as “past a 10” which is not a possibility. I personally imagine being sawed in half without any anesthetic as my 10, so I’ve never experienced anything more than an 8. This was my 8.
- A quick note about my pain tolerance: I once did an alcohol study in college where I was paid to get drunk and be shocked by a buzzer. The experimenter told me to rate my pain from 0 to 100, and at 100 we would stop and conduct the experiment. He stopped when I hit 50. While stuck in the psychology department until I was legally sober, I asked him why he stopped early. He said, “Well, we could not legally go any higher. Most people rated their pain at 100 at half that level.”
So, I woke up early that morning with a sharp, stabbing 8/10 pain in the right lower quadrant of my abdomen. It felt like my insides were exploding. My body and I had no idea what was going on. I was sweating profusely with loose liquids coming out both ends. When I was not on or vomiting into the toilet, I was writhing (literally) on the floor in pain. Navigating my way through the house in a pain-filled stupor, I almost blacked out on the stairs.
I contemplated the embarrassment of going to my ER and then managed to force myself to take a maximum dose of ibuprofen. I sent my roommate a series of texts which can only be described as a bad free verse poem:
“Are you awake”
She woke up, gave me a heat pack, and offered to take me to the ER. I declined and writhed in bed for another 1/2 hour before passing out. I woke up hours later, in much more tolerable (but still horrible) pain. One waddle to the bathroom, and I knew there was no way I could meet my co-worker.
My hopes to meet my co-worker were dashed, and I was disappointed. But I clung to the hope that my new primary care doctor (PMD) could explain it at my upcoming appointment. My hopes would soon be dashed again.
In April 2015, I met my new PMD. I had selected her out of a wide variety of family practice doctors accepting new patients because she had extra listed expertise in obstetrics and gynecology. As a woman who one day would like a husband and family, it seemed like a good idea to start with a PMD now who could take care of me in the hopefully child-bearing future.
My PMD and I discussed my whole health history, reviewed my medications, and flipped through the piles of paperwork I had brought her from other health organizations. (Told you health care providers can make good patients!) At the end, she asked me if there was anything else. I hesitated for a moment and then told my story.
My PMD was stumped. She offered a pelvic ultrasound, which she did not think would show much a month later. I agreed and did not want to pay the co-pay of an ultrasound. We agreed I would call her if it ever happened again.
My hopes that my PMD would know what was going on were dashed, and I was disappointed. But I clung to the hope that weird, awful, vomit-and-diarrhea-inducing pain was a one-time fluke. My hopes would soon be dashed again.
Mid-December 2015, I came home from a 12-hour shift at the ER. I was exhausted. I had another shift the next day, so I collapsed into bed, hoping to sleep through the night.
I woke up in sharp, stabbing, lower mid-abdominal pain in the middle of the night. “Oh, sh*t,” I thought. I knew what this pain was though I did not have a diagnosis. The one-time fluke pain was back.
I forced myself out of bed to take the maximum dose of ibuprofen and clenched my abdomen as my colon got rid of every last thing that was in it. I knew the pain would get better, and I told myself I would not bother my new roommates if I could help it. As I writhed in pain on the floor, I noted that on the bright side, this time it was only sharp, stabbing 7/10 pain and only diarrhea-inducing pain.
After 15 minutes of writhing, unscheduled colon cleansing, and wondering if I would die, I sent my roommates a bad free verse poem:
“Wake up please”
My cellphone failed me, and the texts did not go through. I waited a minute, and as another strong wave of stabbing pain set it, I knocked on my roommates’ door half-naked and asked for help. On the bright side, one of my roommates is also a nurse, so she immediately found heat packs, didn’t bat an eye watching me pants-less on the toilet and bathroom floor, and ran through a differential diagnosis with me.
A couple more painful minutes went by. I contemplated the embarrassment of going to my ER and was comforted knowing one of my favorite female attending physicians was on overnight. My roommate and I agreed it could be serious. We packed up to make the drive, but at about 5 minutes in, I decided the pain was tolerable. I concluded I probably did not have a burst appendix, and if I did, I was ready to meet my Maker anyways. I forced down some tylenol, put on another heat pack, and went to bed.
My hopes that this horrible pain was a one-time fluke were dashed, and I was disappointed. But I clung that my PMD would not be too alarmed. My hopes would soon be dashed again.
Despite calling in sick overnight when writhing on the floor, I felt well enough in the morning to go into work (thanks to maximum dose ibuprofen and tylenol). Before work, I called my PMD’s office. I told her nurse what happened, and my lingering theory as to what it could be: an ovarian cyst rupture from polycystic ovarian syndrome.
Polycystic ovarian syndrome (PCOS) was originally discovered by two American gynecologists named Dr. Stein and Dr. Leventhal in 1935. The two men noticed the presence of ovarian cysts coincided with anovulation (the body not releasing an egg during ovulation aka infertility). The syndrome was named Stein-Leventhal syndrome and is better known as polycystic ovarian syndrome, so named after the hallmark cysts on the ovaries.
Despite being first described over 80 years ago, PCOS is poorly understood. The syndrome is marked by 2 of the 3 symptoms: irregular periods, polycystic ovaries, and excess androgens. It is the most common endocrine disorders of women of reproductive age, affecting 4-12% of women, approximately 3 million women in the United States alone. The exact cause is unknown, and experts are unsure whether the dysfunction begins in the ovaries themselves or within the endocrine centers within the brain.
Occasionally in PCOS, ovarian cysts rupture, disturbing nearby nerves in the abdomen, creating abdominal discomfort and occasional GI symptoms like nausea, vomiting, and diarrhea. My symptoms fit the description of ovarian cyst rupture. I, however, did not look like the lovely little Google Image for ovarian cyst rupture:
This image from The Walking Dead is more accurate:
The nurse asked me for a callback number. I gave her my work number in case something was urgent, hoping she could just leave a message on my cellphone.
The nurse called back at work, saying I needed to make an urgent appointment for a pelvic ultrasound. My heart dropped. I called the radiology department, hoping urgent wasn’t as urgent as it sounded. It was. They wanted to see me that day, which wasn’t possible since I was working a 12-hour shift. I was scheduled as soon as possible, which was the next afternoon.
My hopes that to leave as scheduled to go home for an early Christmas celebration were dashed, and I was disappointed. My hopes that the pain was a one-time fluke were dashed, and I was very disappointed. I found myself unsure of what to cling to anymore. I had little hope for a clean slate of health, so I used my spare moments at work to find the most up-to-date treatment options for PCOS.
The following day, I had a morning meeting with my finance guy to discuss ways to save and plan for the future. He’d always given me a lot of hope for a husband and children, saying I needed to plan for them now and I’d be glad I did. I usually enjoyed our meetings, but that day I could barely sit through it. I was fighting him on all of his suggestions and answering sarcastically to everything else. At the end of our unproductive meeting, I apologized for being awful. I explained I had a medical appointment I was nervous about, and he said he hoped it’d go well.
I didn’t see the point in talking about the future that day. I had little hope for the future. This pain, this ultrasound, this undiagnosed issue could mean I might have cancer, be infertile, or any variety of horrible things. What was the point of talking about the future if I didn’t have one?
After my appointment with him, I had a little over two hours before my ultrasound. I recognized I was being an awful, hopeless human being who was making other people miserable so I wasn’t alone in my own misery. I didn’t like how I treated my finance guy, and I didn’t want to take out of my fears, anxieties, uncertainty, and negative feelings out on anyone else. So, I went to the closest church, collapsed in the front pew ,and proceeded to cry my eyes dry.
My hopes for a clean slate of health, future children, the future family life I thought I was building, had all collapsed. I was beyond disappointed. I was in a sinking pit of despair. All the while, the phrase “hope does not disappoint” kept pestering me.
Hope does disappoint, I yelled back. Hopes does disappoint, I dejectedly reasoned. Hope does disappoint, I screamed internally as I wept, wept, and wept. My hopes failed. Not only was my body failing me, but also and even more painful, I felt that my beloved Lord was failing me.
I know St. Paul wrote that “hope does not disappoint” (Romans 5:5), but my hopes had failed. I couldn’t pray. I couldn’t say any words that distantly sounded like hope. No matter how much I reasoned, I didn’t believe that God would make everything beautiful in its time (Ecclesiastes 3:11), or that God is near to the brokenhearted (Psalm 34:19), or that God was with me always (Matthew 28:20). The whole Bible and all of God’s promises sounded like dirty, dirty lies. Hope does disappoint, St. Paul! Hope even fails!
Eventually, I was out of tears, out of fight, and out of emotion. I left that church, dead inside. I tried to cheer myself up with coffee from my favorite coffee shop on my way to the appointment. I needed liquid to fill up my bladder for the scan anyways. But even as I sipped my favorite cup of strong, delicious coffee, I felt nothing. I was beyond disappointed. I was beyond despair. I was absolutely robotic as I went to have that fateful pelvic ultrasound.
I tried my best to joke and smile with the staff. The radiology technicians rotate through my department, so some of them looked vaguely familiar. My technician was very sweet, and we briefly swapped “war stories” as I like to call them. As she was ultrasounding up my lady business, I invited her to stop by and get food on Christmas at our party since we were both stuck working. I tried my best to make everything appear normal, but I was desperately lying to myself to get through the appointment without crying.
My spirits dropped even further when my ultrasound technologist took extra time on my the right side. As she left the room, I peered on the monitor, noting where she placed arrows. I’ve never been formally trained to read ultrasounds, but arrows usually mean abnormalities. I saw arrows. Something was off.
I gritted my teeth to prevent my lacrimal glands from overproducing tears, put on my clothes, and forced a smile as she came back into the room. She told me test results would be up in a day or two. I thanked her and left, making the 2-hour drive to my hometown.
In the safety of my car, I disproportionately laughed at the ridiculousness of the appointment and then let out what little liquid I had left in my eyes. When I had nothing left, I started to drive home. During that 2-hour drive, I wanted to cry, but I couldn’t. I wanted to pray, but I couldn’t. I wanted to laugh, but I couldn’t. I wanted to have an inkling of hope, but I didn’t. I wanted to punch something, but I couldn’t. I wanted to have an inkling of emotion, any emotion, but I didn’t. I was beyond disappointed. I was beyond despair. I was just so hurt I was numb.
The anguish in my soul from this continuous piling of disappointments was like a cut that kept getting deeper and deeper. This latest cut, this ultrasound, had just severed my nerve. Every hurt and disappointment above this point was numb. I knew more hid beneath that nerve. Simple skin anatomy taught me that underneath the nerve lies blood vessels, subcutaneous tissue, muscle, even bone. I knew underneath all my lack of feeling was the the true core of the matter, but I was not ready nor willing to delve any deeper.
I instead clung desperately to the little unrealistic hope I had left: an unimpressive ultrasound. But I was a least a day away from any results. So, as I have told thousands of patients, I told myself to wait patiently and that no urgent news was good news.
It’s difficult to be a patient, not a provider. Difficult does not even begin to explain the horrible difficulty of forced humility when you’re used to being a provider and become a patient. But it’s difficult to feel incompetent with your own body when your very wellbeing is built on understanding the human body. It’s difficult knowing that the body, your body, the body that you understand most intimately has failed you.
As a health care provider, we see our own morality on someone else daily. We play games with ourselves to pretend that it could never be us, will never be us, but when you’re a patient, the games stop. Our own morality demands attention. We have to receive care instead of give it. We have to sit in the unknown. We have to realize we’re powerless too.
As C.S. Lewis wrote:
“Pain insists upon being attended to. God whispers to us in our pleasures, speaks in our consciences, but shouts in our pains. It is his megaphone to rouse a deaf world.”
– C.S. Lewis, The Problem of Pain
Underneath that struggle of being a patient, having my body fail me, and seeing a glimpse of my own mortality and weakness, I knew I was really struggling with the thought that my Lord had failed me.
For a variety of reasons, I felt very abandoned by God at the time, not just when it came to this aspect of my health. As I’ve written before, I struggle very much with feeling forgotten and looked over. It was just too much to think that while many of my friends and acquaintances were celebrating the births of their first children and announcing their first pregnancies, I might never have that same joy. Ever. This ultrasound could be cancer, infertility, a ruptured appendix that was killing me slowly. It was just too much to bear. So, I left myself in a callous, detached state, clinging not to God but to a wildly unrealistic expectation that nothing would be wrong.
But I knew something was wrong. I saw the arrows, pointing to something abnormal. I just didn’t know what it was yet, and sitting in that uncertainty was its own circle of hell.
My sister and her family came up for our early Christmas. My grandparents drove over to my parent’s house. My brother was around and did not work the entire time. My nephew Sweet Pea was filled with utter joy and excitement. My little 1-month old nephew Baby Pie slept peacefully in everyone’s arms. It was a peaceful holiday on the exterior. Interiorly, I was struggling to embrace the joy of the holiday and be grateful for all the blessing I had before me.
Before driving back to Milwaukee to work the actual Christmas holiday, I got a message from my doctor:
Hi Ms. M,
Your ultrasound did not show any abnormalities.
Nothing!? But, I saw the arrows! Something was wrong, right!? But my heart was overjoyed at my unrealistic expectation being fulfilled. No abnormalities!
But as happy as I was, the logical nurse in me didn’t believe it. No one has 7-8/10 diarrhea-inducing pain without a single thing being wrong. I logged into MyChart, the personalized patient medical record to read the radiologist report. It read:
1. Normal sonographic appearance of the uterus and ovaries.
2. No evidence of polycystic ovarian syndrome.
No evidence of PCOS!? For once in my life, I enjoyed being wrong! Then what were the arrows? I wondered. I scanned through the report until I found the section discussing my ovaries:
The ovaries are normal in size and echogenicity. Small
normal follicles are seen within each ovary. Approximately
10 follicles are seen within the right ovary and less than
10 are seen in the left ovary.
Right ovary: 2.1 x 1.5 x 2.5 cm.
Left ovary: 1.6 x 2.5 x 2.4 cm.
Huh. Guess the arrows were pointing out my follicles, I concluded. I had looked up the treatment options for PCOS. If I had looked up the diagnostics, I would have been more alarmed that 10 follicles were in my right ovary for where I was in my cycle. But ignorance is bliss, as they say, so I thought little of that bit of information.
I called my doctor’s scheduling office to schedule an appointment for as soon as possible as she requested. I was completely oblivious to the fact that this could mean something was still wrong, just not go-to-the-hospital-right-now wrong. As soon as possible was 3 weeks away, right after my birthday.
I decided I was wrong, nothing was wrong, and all was well. I clung to my proof, to the radiologist read, to my doctor’s message that nothing was wrong, and therefore nothing could be wrong. I knew this series of disappointment had hurt me, but I decided not to delve any deeper into the wound. I ignored this numb, hurtful place and overachieved to hide my pain by keeping busy.
But as C.S. Lewis wrote, “pain insists upon being attended to.” As much as I tried to ignore my agony, pretend all was well, and go about my life, I knew something more painful was buried below.
At my doctor’s appointment 3 weeks later, I would not be able to ignore God’s rousing megaphone when my worst fears came true.
January 2016, I had a follow-up appointment. I was rushed and tired that morning. I had to wake up early, fight rush hour traffic, and be mentally prepared for 12-hour shift at work immediately after my appointment. I grimaced as I saw the post-holiday scale weight and thought that’d be the worst thing I’d learn that day.
My doctor came in, and we discussed my ultrasound. She asked me where I was in my cycle. I told her, and she grimaced. “Well, based on what you’re telling me, this ultrasound confirms you have polycystic ovarian syndrome,” she said.
My heart starting racing. My nose started tingling, and I clenched my jaw to prevent myself from crying. But the radiologist said otherwise! I internally screamed. This isn’t happening!
“Ok,” I said, and I dug into my purse for the article I had brought. Despite operating during the assumption that nothing was wrong, I brought my article of treatment options for PCOS. I knew I didn’t have an androgen excess from previous blood work, and I did not like the idea taking estrogen because of its role in coagulation and increased risk of blood clots. After a brief discussion, we settled on a progesterone prescription.
I was still in denial when we began discussing what I would do if a cyst ruptured again. My doctor asked me what I did the two times. I explained the writhing on the floor, the heat packs, the maximum doses of NSAIDs, and the almost trips to the Emergency Department.
She grimaced. “That sounds awful.”
“It was,” I said.
After a moment, she said, “I want to give you a prescription for something stronger so you don’t have to go.” She said that she was going to write for a prescription strength NSAID and a low-dose narcotic. I refused the narcotic. I didn’t want it in my house or on my record, and furthermore, I was in complete denial that it could happen again. She insisted. I thought of the ER co-pay and the embarrassment of seeing my co-workers. I agreed. She wanted to write for 20 pills. I insisted on just 5. She wrote for 10.
Before I knew it, the appointment was over, and I was in the adjacent pharmacy with 3 prescriptions in my hands for medications I didn’t want for a disease I didn’t want to have. I was not ready to process the full weight of the appointment in the presence of strangers. I robotically gave the scripts to the pharmacist, perused the over-the-counter medications as I waited, smiled as I got my prescriptions, and nodded in understanding as I received the obligatory speech from the pharmacist on each one.
I got to my car and cried. My proof of clean health was wrong. The radiologist was wrong. I was diseased. My hopes had failed. I was more than disappointed. I was more than in despair. I was more than sad. I was more than numb. It took me a while to realize it, but I was in the depressive state of grief.
- Denial and Isolation – the initial reaction is to deny the full reality of what is happening as a defense mechanism to carry us through the first wave of pain.
- Anger – as reality begins to wear away our denial and self-isolation, we are not ready to experience the full depth of our grief, so we deflect our pain as anger towards others or inanimate objects.
- Bargaining – the feelings of helplessness and vulnerability in grief are accompanied by a need to regain control, so we toy with ourselves, saying “if only this happened” or “if only I do this.” Too, we might may make secret bargains with God to get the outcome we desire.
- Depression – we feel sadness, regret our past choices, and worry about the practical implications of our grief such as the cost and coordination of a funeral after the death of a loved one. Too, our depression can be hidden and subtle where we privately mourn our loss and prepare to let go.
- Acceptance – Reaching this final stage of grief is a rare gift. Social interaction may be withdrawn for us, but acceptance is marked by calm withdrawal, an escape to find inner solitude and mourn our loss in a constructive, private manner. As Kübler-Ross has said, “Learn to get in touch with the silence within yourself and know that everything in this life has a purpose.” This stage is all about getting in touch with the solitude inside ourselves and embracing the uncertainty of life.
I was so in denial that I was even suffering that I did not recognize I was grieving. I was too busy pretending I could be fine, or being angry at my body and God, or making bargains in my head where if I did this or this test showed this, I would be OK. But when I sat in my car with a diagnosis of PCOS and 3 prescriptions in my hand as proof I was imperfect and diseased, I could not deny reality anymore. I could not be angry anymore. I could not make all more bargains. All I could do was cry.
I had 12 hours of taking care of other people in front of me, so I let myself cry for a only few moments. I collected myself, hid the prescriptions, and went to work as if nothing had happened. Immersed in the chaotic rhythm of a day in the Emergency Department, it felt almost as if nothing had happened that morning. No one treated me differently. My body showed no signs of falling apart. Nothing seemed off.
But I came back to my car that night and saw the brown bag of prescriptions and an after-visit summary from my appointment. I could not deny reality. I had no capacity to be angry anymore. I had no bargains left to make. It was time to dig beneath that severed nerve of pain, hurt, despair, and disappointment. It was time to grieve so I could come to accept my diagnosis.
I came home and cried until I had nothing left. I could not breathe through my nose I had so much snot come out. I was on the verge of hyperventilating from being overcome by emotion. And just when I thought I was done bringing all my anxieties, uncertainties, and fear to the surface, more came out.
Like my pain from an ovarian cyst rupturing, each wave of pain was unexpected and more painful than I imagined. Yet, I knew at some point the pain would end or become bearable. So, I rode each wave of spiritual agony and emotional anguish with the knowledge and confidence that it would be tolerable with the Lord’s help.
My thoughts swirled around one logical reality that I had always known existed but vehemently denied: I might not be able to have children.
(Yes, yes, I might still be able to have children.Yes, yes, the success rate for pregnancy for women with PCOS with treatment is around 80% using NaPro technology. Yes, yes, mine is pretty mild, which is good. Yes, yes, there’s medications that can induce ovulation. Yes, yes, God can do anything. But that all does not change the reality that I might not be able to have children.
And here’s the thing about statistics: You never know which end of the statistic you’re going to be one. They’re not like a test that you can study harder for. When I had LASIK eye surgery, I ended up in the less than 1% of patients who have permanent glares and halos after surgery. They’re supposed to go away after 3-6 months. It’s been 3 years for me, and they’re still there (and in my moments of utter paranoia, I swear getting worse). Less than 1%. Excuse me for not liking the 20% odds of not getting pregnant.)
And it’s not that I don’t think God can do anything. He can! I’ve seen some pretty miraculous things in my career. But I’ve also seen more patients pray relentlessly for a miracle that every came. In those times and in my own life, He has also taught me that sometimes the answer is no.
Sometimes, we don’t get what we desire the most. Sometimes, we aren’t cured. Sometimes, we suffer, and God deigns for whatever His reasons that it is in our soul’s best interest to remain suffering. And logically, someday, a prayer for healing is not going to be answered they way we want because all of us are going to die.
Sometimes the answer is no.
And as I cried every last tear, emotion, frustration, and fear, I realized that I might not be able to have children, and that might be God’s will for my life. It crushed me. I might not only not be able to have children, but also that might be what God wants for me. It was the heaviest, most painful wave of spiritual agony and emotional anguish that almost took my breath away to the point of hyperventilation.
As I breathed through the pain, it hit me: was I following God to get what I wanted, or would I follow God regardless of me getting what I wanted?
For a long time, a lot of my confidence and faithfulness was unconsciously dependent on God giving me the desires of my heart. That’s what I hear Psalm 37:4 teaching me, right? “Take delight in the LORD, and he will give you the desires of your heart.” So, what the what, God? I’m being a good little Christian over here. Where are those desires of my heart!?
My desires and hopes had failed. So, would I follow God regardless of me getting what I wanted?
Even if He didn’t give me all the desires of my heart? Even the largest, most hoped for, most longed for, most prayed for desire? I knew in the core of my being, it would be a lie to say yes. But I knew to be a true Christian, I would need to say yes. I knew I wanted to come to say yes to God, even when God’s answer to me was no.
I mourned the loss of what I had hoped and desired my future to be, cried a few more tears, and fell asleep in utter physical, emotional, and spiritual exhaustion.
I wish I could write that I woke up in supreme confidence that I will undoubtedly follow Christ anywhere, regardless of what He does and does not give me. I wish I could write I’m married with more children than I ever thought possible. I wish I could tie everything up with a pretty bow and restore your hope in Our Good Lord your own despairs, sufferings, agonies, and trials.
But I can’t.
Somedays I love the Lord and other days I grumble against Him. Some days I take some steps forward in faith, and other days I fall back in fear. It’s messy, imperfect, and full of hardship, but that’s the spiritual life.
The spiritual life is not just a climb up. All mountain climbers know reaching the peak requires both climbing up the mountain and sometimes allowing yourself to walk into the valleys to find the best path to the apex. Sometimes the spiritual life involves falling with our crosses and fumbling along as we pick up it daily, taking those small steps each day with more than an abundance of heavenly grace towards that “yes” that we will follow Christ no matter where He leads us.
And that is what St. Paul was talking about when he wrote “hope does not disappoint.” Hope in God and God alone does not disappoint. He may not give us the desire of our heart, but He will give us the grace to let go and to embrace His perfect will for the goodness of our souls. As he wrote:
“Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access [by faith] to this grace in which we stand, and we boast in hope of the glory of God. Not only that, but we even boast of our afflictions, knowing that affliction produces endurance, and endurance, proven character, and proven character, hope, and hope does not disappoint, because the love of God has been poured out into our hearts through the holy Spirit that has been given to us.”
Our afflictions offered up leads to endurance. Endurance through trial builds our character. Our character refined in the fire of suffering creates a hope, a peace, a confidence in the Lord’s perfect providence.
I thought I’d never stop crying that night, but I did. I’ve thought so many times I’d never get through something, but by the grace of God, I did. I may not know the end of my story this time around, but I know My Father. My Father only wants good for me, even if that means breaking my heart now and again to form my being more perfectly to the person He created me to be.
As I prayed when struggling through another deep-seeded and disappointed hope:
Lord, break my heart in the ways it needs to be broken. Heal my heart in the ways it needs to be healed. Hold firm my heart in the ways it needs to be attached.
I’m praying a version of this prayer daily to accept my newfound diagnosis. I may not have the perfect, grace-filled ending to my story, but that doesn’t mean I have learned a couple things:
1 – Where is the source of my joy?
Sometimes it takes our desires and hopes to utterly fail to realize we’re not delighting in the Lord. I know for me I was delighting in the future trials of marriage. I was delighting in what I perceived to be the joys of His gifts instead of embracing the joys of my daily life.
I was delighting in the gifts, not the Giver.
In delighting in the gifts of God instead of God Himself, I was slowly and unconsciously building my faith life on devastating expectations. God loves me too much to allow me to build up my joys on the future and forget the present.
2 – Compassionate patient care
Unlike any other time I’ve been a patient, I’ve learned to be more compassionate. Though I’m very much not an expert in compassionate patient care, I know I can cite a handful of conversations with patients and their families since my diagnosis that I never would have had the courage or compassion to have without my own experience grappling with a diagnosis I didn’t want to have.
But grappling with an unwanted diagnosis, suffering, and even my mortality can be a blessing to both myself and others. Dr. Kübler-Ross in her landmark On Death and Dying recommends it:
“Though every man will attempt in his own way to postpone such questions and issues until he is forced to face them, he will only be able to change things if he can start to conceive of his own death. This cannot be done on a mass level. This cannot be done by computers. This has to be done by every human being alone. Each one of us had the need to avoid this issue, yet each one of us has to face it sooner or later. If all of us could make a start by contemplating the possibility of our own personal death, we may effect many things, most important of all the welfare of our patients, our families, and finally perhaps our nation.”
– Elizabeth Kübler-Ross, On Death and Dying
I get why patients and families can be so horrible! I did it myself! In my uncertainty, my discomfort, my fear, my hurt, I wanted to get rid of my pain by placing it on someone else.
I’ve realized all those patient behaviors that drive me crazy is me glimpsing part of my patient’s mourning process. That incessant need to know lab values and test results? Denial. That horrible attitude towards me? Anger. That persistent asking if they’re doing the right thing? Bargaining. Those tears I rarely see? Depression.
And yet, my most cherished moments are also me glimpsing my patient’s mourning process, just at the very hard-earned end. That rare, rare smile of peace despite a devastating illness? Acceptance.
Illness is hard. I can’t write anything more profound that hasn’t already be written, so I’ll just quote it for you:
Illness and suffering have always been among the gravest problems confronted in human life. In illness, man experiences his powerlessness, his limitations, and his finitude. Every illness can make us glimpse death. Illness can lead to anguish, self-absorption, sometimes even despair and revolt against God. It can also make a person more mature, helping him discern in his life what is not essential so that he can turn toward that which is. Very often illness provokes a search for God and a return to him.
3 – Sometimes God’s answer is no.
I logically know this, but I need to learn this lesson over and over again. Giving up a good desire is the hardest kind of humility I know, but it’s one I desperately need to learn.
Again, I can’t write anything more profound that hasn’t already be written, so I’ll just quote it for you:
“Moved by so much suffering Christ not only allows himself to be touched by the sick, but he makes their miseries his own: “He took our infirmities and bore our diseases.”But he did not heal all the sick.”
4 – Because He has something better.
“His healings were signs of the coming of the Kingdom of God. They announced a more radical healing: the victory over sin and death through his Passover.”
God’s gifts that I desire so much, the very things I place devastating expectations upon, are not the end goal. They are signs of a more radical love, a more radical joy, a more radical life: JESUS AND HIS UNCONDITIONAL LOVE FOR ME.
Children are not the end goal. Yes, they are beautiful gifts, but they are signs of how loved I am by the Father and a challenge for me to love the Father more perfectly.
Marriage is not the end goal. Yes, it is a beautiful sacrament, but it is a outward sign of God’s love for His Church and a challenge for me to love unconditionally as He does.
Comfort in this life is not the end goal. Yes, it is a wonderful gift to have a community and a sense of belonging, but it is a sign of our heavenly home and a challenge for me to see all the work that needs to be done to build the Kingdom of God on earth.
God’s gifts are not the goal. God is.
I had slowly lost sight of Him, became deaf to His pleas of love, ignored the sweetness of His affection. It may have taken a megaphone like ovarian cyst ruptures and a new diagnosis to shake me awake, but He has my attention.
Hoping in our plans, in our certainties, in our desires, and in our health will ultimately fail. Everything in this world will pass away. But hope in Him and Him alone never disappoints.
“Blessed are those who trust in the LORD;
the LORD will be their trust.
They are like a tree planted beside the waters
that stretches out its roots to the stream:
It does not fear heat when it comes,
its leaves stay green;
In the year of drought it shows no distress,
but still produces fruit.
More tortuous than anything is the human heart,
beyond remedy; who can understand it?
I, the LORD, explore the mind
and test the heart,
Giving to all according to their ways,
according to the fruit of their deeds.”