It’s been a long time since I posted on this blog, but I’m back to share some new experiences. From May-September of this year, I was dealing with a health issue, and want to write about the struggle here.
Raleigh, North Carolina
I arose at 6 a.m. at the Homewood Suites in Raleigh, a middle-of-the-road business hotel. At breakfast, I devoured what I call a banana taco – a waffle wrapped around a banana with peanut butter.
I was doing what I love to do – travel – and was thrilled to be at a conference for high-performers that my employer had sent me to. I had never been among the tall trees of North Carolina, and with my expensed rental car, I was excited to explore the Research Triangle area in my free time.
After the first morning session and lunch, my colleagues wanted to take a walk around the building. Enjoying the company of new people, I agreed. The day wasn’t yet too hot for a half-hour stroll.
On the second lap around the building was when it began. I knew what was happening as soon as I could feel it starting, but there was nothing I could do to stop it.
It was another “episode” – as I called it – one of the many I had felt over the past few years. It wasn’t a panic attack, and it wasn’t painful. It was more of a rushed feeling of light-headedness and weakness, like the blood rushed out of my head and arms and chest and into my legs, causing a strong sense of fatigue.
As sat back down in the conference room for the afternoon session, I struggled to put together a thought other than: oh no, here we go again. It was hard to sit up straight, it was hard to focus, and my mood plummeted.
Okay, everyone, stand up and stretch! our enthusiastic training leader said during a break.
Brad, what’s wrong? she asked, noticing I didn’t stand up.
I already got my exercise for the day at lunch, I said, afraid to stand up, and eager to find any reason not to draw attention to myself.
Why was I feeling this way again?
The episodes are distinct and I’ve grown to recognize them. Since 2014, I’ve had these bouts of weakness and dizziness and blur come and go.
In the first couple years, the symptoms only came about after a long run or intense strenuous exercise, and would go away within a day or two. Not a big deal, I thought at the time – perhaps I had just over-exerted myself.
But then the episodes got repetitive, and lasted for longer. I started taking note of them. In June 2015, I had a 2-week spell. In November and December 2015, a 3-week episode. June-July 2016. Late January-February 2017. September 2017. Late July 2018.
These spells drastically affected my quality of life and work performance. When they would occur I would do my best to get through the day without anyone noticing. Then I would go home and lay down.
Since the episodes felt very physical and seemed to have a physical cause – they had almost always onset after aerobic or lower-body exercise – I had gone to doctors for these symptoms starting in 2015.
I had gotten routine blood tests – all normal. I had gone to alternative doctors to get other things checked – adrenals, cortisol – all normal. My doctor said in 2018, At this point, we’ve checked off all the typical boxes. If you continue, we’ll begin testing for the exotic.
In addition to going to doctors, I had changed habits to see if that would help. In 2016, while in the midst of one of these episodes, I went on the Whole 30 diet – cutting out grains, alcohol, and gluten, increasing intake of fruits and vegetables. But I didn’t feel any better at all. I also tried drinking more water, changing my exercise routine, taking vitamins/supplements, as well as other habit changes.
Nothing seemed to help.
I knew the episodes were not at all normal, but since they always seemed to eventually go away – and because I didn’t want to keep spending hundreds of dollars in doctors appointments – I had never decided to pursue it further.
That is, until this moment.
This May 2019 episode had me saying enough is enough. I had avoided weight-bearing leg exercises and long-distance running, but this time an episode started after a 20-minute walk. What kind of life was I living as a 29-year-old man, that I couldn’t even walk without this possibly happening? Why did I feel like this?
There had to be a reason.
I somehow survived the classroom sessions each day in Raleigh, aided by advil and two cups of coffee which did their best to mask the symptoms before I could rush back to the Homewood Suites and jump into the clean sheets of the queen-sized bed.
When my plane arrived back home in Austin, walking through the terminal of ABIA seemed like a marathon, my fragile body feeling like it could hardly put one foot in front of the other.
Enough was enough.
I would pursue a diagnosis in order to get a treatment plan, no matter how many doctors and experts it took. I wouldn’t be biased against what the cure was, as long as the cure worked. I would be open to any ideas – physical, mental, emotional, spiritual. Anything that would make me feel better. And I would throw money at the problem – I decided on a maximum budget.
To begin, I typed out a true record of the problem — the symptoms, the details around them, which I’ll paste part of below.
- Feeling of weakness of the upper body, especially chest area
- Tightness in the legs and pressure in lower body, despite no activity
- Lightheadedness, slight dizziness
- Slowness of mind and thoughts
- Depression, poor mood
- Inability to focus
- Worsening symptoms summer 2019: heavy legs, inability to walk for any length of time beyond 10 minutes
- The symptoms started as episodes in 2014, lasting a few days
- If symptoms start, they always last a few days at least
- May-June 2019 symptoms are persistent more than episodic, after 8 months of hardly any symptoms
- If I try to press thorough and ignore the symptoms, symptoms will get dramatically worse in coming hours/days
- At first, the only triggers were strenuous exercise of the lower limbs, which i could avoid (running, leg exercises)
- The symptoms would arise 1-2 hours after exercise. Immediately after exercise, I would feel good, as normal.
- As symptoms have gotten worse, walking and just standing is even a trigger. To do any lower body movements at all are a trigger, unless I go slowly.
Affect on life:
- No longer run or any leg exercises or sports
- Walks and movement are limited
- Since May 2019 basic functioning limited, limiting work
- Strong depression and fear of feeling bad
Doctor 1: (D.O.) Osteopathic Doctor
First, I would continue down the traditional route, the path I had stopped in previous years. So I set up an appointment at Austin Regional Clinic, this time with a Doctor of Osteopathy (D.O.) instead of an M.D. They can treat things in a traditional way, but they may also have a different way of viewing things.
So I’ve got a medical mystery for you, I said as my unsuspecting doctor walked in. Here’s a list of all my previous tests, and here’s a list of my symptoms.
She was very kind, suggested the standard blood tests, in addition to some I hadn’t taken before that could detect different viruses. She also said I could try osteopathic therapy (something similar to chiropractic therapy), and a CT scan to make sure I didn’t have something called chiari malformation – a serious condition that can have similar symptoms.
Here we are, finally testing for something real, I thought, while at the same time being injected with a new fear that any diagnosis could be very bad.
The timing of this episode couldn’t have been worse. Within a week, I had a trip I had planned – an international vacation, with one of my best friends, to Hong Kong and Vietnam.
Maybe I shouldn’t even be going on this trip, but I didn’t want all the money to go down the drain. Maybe the excitement of doing one of the things I loved most in the world – traveling, like the rest of this blog is dedicated to – would make a difference. I had never been to Hong Kong or Vietnam.
My blood tests and CT scan results – and my pursuit of a diagnosis within the American medical system – would have to wait.
Like a Wong Kar Wai film, I hoped the glowing lights of Mong Kok might bring some sort of solace to my suffering, but instead I was hardly able to walk a block or two without feeling woozy. I spent most of my first few days in my Airbnb.
Doctor 2: (Family friendly) Thai massage therapist, Mong Kok
I had to do something to feel better. I was on vacation, and I couldn’t even enjoy it. So I thought – let me look up a place to get a massage. Massages are supposed to be good in this part of the world, right?
I found a Thai massage therapist located in a residential building in Hong Kong. The description of their massages said Open up the energy pathways of the body.
Sounded perfect. For only $30, I got a 60-minute massage – the kind where they stand on you while holding bars bolted to the ceiling.
Walking down the crowded streets was easy after that massage. The fragility of my body and the awareness of any symptoms escaped for a few hours.
I should get one of these every day, I thought.
Doctor 3: Two young women at the Vietnamese pharmacy
It was monsoon season, and when it rains, it pours that time of year in Vietnam (think: Forrest Gump).
The same could be said for my physical symptoms. Everything seemed to be going wrong as I tried to tour Saigon and Da Nang.
In addition to being very limited in movement during the daytime, at night I developed a fever – with a splitting headache and sweats.
To get through the days, I developed a rotation – 2 tylenol during the day, 2 advil during the night. I knew it wasn’t good to always take these, but it was the only thing that made me feel slightly better.
That was – until I ran out of medication.
One night, as a fever onset at 8 pm, I realized I didn’t have any medication. As I lay in bed to gather my energy, I developed my plan: I would take the elevator downstairs, hop on my rented moped, go to the nearby American-style hamburger joint to get dinner — it wasn’t good or healthy to go to bed hungry. Then I would go to the pharmacy down the street and buy some tylenol, or whatever the local equivalent was here in Da Nang.
Two young women, who couldn’t have been much older than 18, worked the pharmacy shop window, which opened up to the street. When I asked them if they had tylenol, they didn’t understand.
After a few back and forths, under which I was able to convey I had a headache and generally feeling unwell, they gave me something different. It didn’t say tylenol or acetaminophen, but I didn’t care. I was on vacation, and it was Vietnam. I would try it anyway.
I took it, and within an hour began to feel amazing. Perfectly normal and ready to take on the night.
What was this? I looked, and it was tramadol – a narcotic. This stuff was amazing! No wonder so many people are addicted to this!
Early the next morning, we left Vietnam, and I never made it back to the pharmacy to buy more. My little packet would have to last me a while, as Hong Kong had stricter drug regulations.
Probably a good thing.
Doctor 4: Brad (the man I am named after)
The Vietnamese fever left me, thankfully, and I made it back to LAX, sitting on my suitcase as I called the D.O. A nurse relayed that the CT scan showed not much, but did show some minimal arthritic changes.
I called Brad – my dad’s old roommate at UT, and a family friend who I was named after. The legend goes that that Brad, a recently retired radiologist, performed the ultrasound on my mom when she was pregnant with me and determined I was a girl. When I came out, they didn’t know what to call me, so they called me Bradley.
To be honest, I’m not even sure if this Foster-family legend is true.
What does that mean? I asked him. Minimal arthritic changes.
It doesn’t mean much, he said. Many people have those. I would have to look myself to be sure, but they would have noticed something was serious.
Good, I thought. The CT of my spine didn’t show anything.
Keep in touch, let me know if you need any more advice. Let me know if you get to feeling better, Brad said.
Doctor 5: Crowdsourcing (From the nondoctors)
As I started to share my symptoms with close friends and family, and even my boss, opinions started coming in left and right.
I mean it seemed like EVERYONE had a diagnosis and treatment plan after I had spoken only a few words.
Getting enough sunlight? Maybe you’re vitamin D deficient.
What’s your diet like?
Are you drinking enough water?
How much coffee are you drinking?
Are you sleeping well?
Are you praying for healing?
Have you tried acupuncture?
Are you stressed out? How is work?
Didn’t you go through a breakup recently?
I was surprised at how quick people were to speak before listening. Before I could even articulate two sentences about how I was feeling, they would jump in with their opinion!
Even if I said yeah, tried that or yeah, thought about that they still looked at me with a suspicious look, as though I was crazy and a hypochondriac.
How I didn’t want to be a hypochondriac! Was I? Was I doing this to seek attention?
When I thought about it, I knew I wasn’t. I was a very private person, and unless something was really serious, I wouldn’t be talking about something so personal with other people.
But when you feel like something is wrong, when weakness overtakes your body and you are unable to move in ways you used to, you begin to second guess every perception of yourself. And when you’re lacking confidence, every opinion thrown your way suddenly holds more weight.
Have you been drinking too much tequila at Margarita Mondays? my boss asked me, referring to the monthly happy hours I planned for work. Maybe she was right.
Maybe everyone was right, but the more I thought about it, the more I knew they weren’t. I was very self-aware, and had been desperately seeking to find patterns to explain why I felt this way, to no avail.
I get plenty of sunlight.
I sleep great.
I had already extensively changed my diet, with no resolve.
I drink a lot of water, and really not that much caffeine or alcohol.
Yes, I went through a breakup, but I’ve been through much worse.
I’ve prayed for healing with sincerity of heart. If that’s not good enough for God, then what was?
That all said, I was open to trying new things people suggested. Like Stephanie, a longtime friend of mine.
Have you tried therapy?
Stephanie, nothing particularly traumatic has happened to me, I told her. I don’t need to go to therapy. Plus, my symptoms are like very physical things. Not mental.
I know but you should still go to therapy. It can help.
Doctor 6: The therapist
I woke up – my legs heavy, my arms weak, desperate for some sense of solution. Why wouldn’t I try therapy? I was committed to getting better, and if it could help even a little bit, why wouldn’t I?
I had gone to therapy as a teenager, working through different body image and depression-related issues.
I had largely healed, but was there perhaps something subconscious going on in my feelings about my body to make me feel this way? I was pretty self-aware – maybe too self-aware of how I felt. Maybe that’s why I was feeling bad?
In any case, if there was something there, I wanted to uncover it.
My first appointment I let my feelings loose, like an energetic dog let off his leash. I didn’t realize I had so much to talk about.
It’s interesting when you say your irrational thoughts and most buried feelings aloud – sometimes you hear them echo in the room, and realize how absurd they are.
I said a thought so crazy that my therapist laughed. I could identify that thought as absurd, and not listen to it, we decided.
As I continued to see him weekly, I don’t know how beneficial it was, but I felt it was a new experience. I had to be growing. We worked through things I didn’t know were there. And, if anything, I could just complain about how I felt and why I didn’t understand why I felt this way.
He could be there to listen to my struggle.
Doctor 7: Neurologist
The neurologist Austin Regional Clinic referred me to was about as flat of a character as could be, akin to the Night King in Game of Thrones.
Yes, this doctor was my villain, and not one worth remembering. He had no empathy, and immediately upon hearing my symptoms and reviewing my CT scan said with just a hint of judgement – it’s probably just anxiety or depression. Eat better, sleep more, cut out the alcohol and caffeine.
Okay man, I get it, I thought. Maybe you’re some brilliant doctor who can spot brain issues from a mile away. But let’s at least have a discussion here – something feels very wrong.
He suggested an EMG / NCS test to see if I had any nerve issues, as well as an MRI of my spine if I truly wanted to rule out most serious things. I did, so I agreed to the tests.
While I didn’t think depression and anxiety were causing my symptoms (I was in therapy, and I had seen a psychiatrist before), I had to listen to the expert. Could I be so anxious or depressed that I would feel such physical symptoms? After all, when I looked in the mirror, it wasn’t like I was losing muscle mass or that I looked unwell, like some of the other people I saw in the neurologist’s office.
There was a term for that, I learned, when your mind causes your symptoms: somatic symptom disorder. What if I was listening so closely to every feeling within my body that I was somehow making myself feel this way?
But at the same time – wasn’t that a cop out answer? To pin something you don’t know yet on anxiety/depression?
I should have been doing everything I could to be feeling healthier I suppose, but things that could make me feel normal were 1) a massage, 2) the Vietnamese opiates (of which I didn’t have any left) and 3) a margarita or two.
Before I was sick I was on a quest to find the best margarita in Austin, but for now I didn’t want to think too much, so I decided to stop at my go-to spot: Gloria’s.
It was mid June. It had been over a month since the episode began. And my tequila-fueled mind again searched for what could be wrong.
I had a long commute every day – what if all this driving to the suburbs was subconsciously making me depressed?
Or, what if it was the scorching heat of the Texas summer? But no, I looked at when these episodes occurred, and it wasn’t specific to a particular season.
The more I turned thoughts over in my head and analyzed it, the more I had no idea what was going on. The more everything just didn’t make any sense.
The effects of the margaritas, like the opiods, like the massages, like everything good in this life, faded away in a few hours. Maybe I needed to figure out a way for these short-term things to last.
Back home, I took the few steps from my car and laid on my couch, feeling blurry every step of the way. Something in me just wasn’t working. It felt like I was deficient in something but I didn’t know what. And any sort of movement just made everything worse.
Slumped on my couch, I looked at the piano whose keys I hardly touched anymore. Unread books sat on the table. All I could muster is to rewatch series I had already watched to find some sense of adventure in the risks the characters took on screen.
Breaking Bad. Mad Men. Better Call Saul.
That’s when a character stood out to me.
Chuck McGill from Better Call Saul.
Chuck, a successful lawyer, is convinced he has electromagnetic hypersensitivity, which isn’t considered by the medical community to be a legitimate condition. [Spoilers] His doctors can never find any sort of real diagnosis for him, but he is convinced he has physical symptoms. This condition eventually causes him to lose his job, his partner, and ultimately, due to his paranoia, his life…
I was glued to the screen, finding a friend I could relate with, a friend whose demise on the show I was worried would become my own.
What if I was going crazy like Chuck? What if things only got worse, and I had to take a leave from work? What if my social life evaporated even more than it already had? What if my perceptions of my symptoms lead to my demise and, ultimately, my death?
Doctor 8: Optometrist
I woke up with a new feeling of discomfort – a burning in my left eye. I got out of bed and took out my contacts (the 30-day night-and-days – the same brand I had been using for 15 years).
My eye was hard to open and it was bloodshot. It felt like something I had before – pink eye. Great, I thought. Pink eye on top of everything else.
At my osteopathic therapy appointment the next day, my primary doctor said it looked like viral pink eye. A few days and it should be fine.
But a few days passed, and the discomfort didn’t go away. In fact, it got worse. My eye watered all day. I was incredibly sensitive to light. When I did go into work, I huddled into a dark conference room with no windows and kept the light off, barely able to look at my computer screen.
Maybe you should go to the eye doctor, my boss said, as my eye was watering during a meeting. This doesn’t seem like pink eye.
Maybe she was right. I set an appointment for a nearby eye doctor, who studied me intently.
How long has this been going on? the optometrist asked.
About a week now.
It’s good that you came in now, because this is a corneal ulcer, she said.
Do you by chance wear contacts while you sleep?
Yeah, I woke up with this, I said. What’s a corneal ulcer?
Basically, it’s a hole in your eye, she said. But don’t let that freak you out. It’s small. It was probably caused by your contacts.
You don’t have any blurry vision, do you? she added.
No, I said, chuckling to myself, thinking, A hole in my eye?!
She prescribed me antibiotics. I had one diagnosis, but it seemed unrelated to my other symptoms.
Suddenly, I hardly cared about my symptoms of weakness anymore – when one problem arises that’s more critical than the others, it’s like a new card on the top of the deck – you forget about the cards underneath.
To live is to suffer, I told my therapist as I wore sunglasses during our session. He laughed. But really, this was my new motto and my positive spin on the situation.
I couldn’t live a normal life – at least not right now, and not in the past month or two. I was hardly making it through work, sitting in the dark, not moving, going home every day to lay in my bed, not even able to watch TV and instead resigning to a podcast…
I was suffering.
But that didn’t mean I wouldn’t continue to live through it.
Doctor 9: Optometrist #2
My corneal ulcer wasn’t going away, despite being on antibiotics for over three weeks. It felt like there was something constantly in my eye. So I decided to go to a different eye doctor for a second opinion.
This ulcer appears neurotrophic and very deep, he said.
This ulcer is so deep I suggest you go to an eye surgeon right away. It’s very dangerous. Here, I can text him right now. You are available today, yes?
My body began to involuntarily shiver, as I panicked in fear, trying to articulate a response.
Okay, they’ve got an appointment in one hour with the surgeon.
In the parking lot, I called my parents and told them what the eye doctor said. I began crying uncontrollably. Why is this happening to me?
Doctor 10: Eye Surgeon
I shouldn’t have been speeding down the tollway at 75 mph with one eye open and the other watering uncontrollably, but I’m the type of guy who wants to do everything himself. My mother asked if she could come pick me up and take me to the appointment, but there wasn’t much time.
I’ll be okay, I said.
The eye surgeon was an incredibly attractive man who couldn’t have been older than his early 30s. I’m sure he has a beautiful wife and kids too, I thought, and loves to mountain bike on the weekends.
In my weakness I was filled with envy. My life would never be that good.
As I explained my situation to the surgeon – that the ulcer wasn’t healing and in fact had gotten worse, one of his first questions was do you have any other physical conditions going on right now.
Yes, I am currently pursuing a diagnosis for other symptoms I have: weakness, fatigue, feeling faint and dizzy.
The surgeon was intrigued. This could be neurotrophic keratitis, he said, Meaning something else with your brain could be going on that is preventing you from healing. I suggest you continue seeing the doctors to see what could be happening there. Usually an ulcer like this heals more quickly. We should be able to get you healed without surgery, but let’s monitor it closely.
He prescribed me an antiviral, antibacterial, and antifungal regimen of medication.
I looked it up when I got back to my car, and causes of neurotrophic keratitis could be multiple sclerosis, nerve issues, diabetes, leprosy, and other serious diseases.
Great, I thought.
I touched based with Dr. Brad later that day who encouraged me to get an MRI and see the neurologist again as a next step.
Back home on my couch, taking the day off work, I tried not to fear the worst.
Doctor 11: Psychiatrist
I had set up an appointment a few weeks prior to confront the anxiety/depression thing. This psychiatrist was one of the most recommended in the Austin area, and even worked with the University of Texas athletics teams. If someone was going to be able to give me a fair psychiatric evaluation, it was her.
She spent an hour and a half with me, and I told her everything, the good and bad, being honest about my life and my feelings and my habits.
And at the end of the appointment, she said that while there are some depression-related symptoms evident, it seemed like those could just be the result of me losing basic mobility and functioning. In other words, it seemed like it was likely an effect of my physical ailments and not the cause.
She encouraged me to rule everything out with the doctors before she would be willing to treat me with depression. She mentioned I could see a cardiologist to get tested for POTS, which had some similarities to my symptoms.
I had an answer to one thing – at least I think I did. The answer to: am I crazy and just making all of this up in my own head?
After the eye surgeon mentioning something neurotrophic and the psychiatrist saying this does not sound like depression – it seemed like there definitely was something physically wrong with me. Maybe I wasn’t like Chuck McGill! And maybe, just maybe, I was only a few stone uncoverings away from figuring it all out.
Doctor 12: Cardiologist
At the cardiologist, they did an EKG and a treadmill stress test just to make sure my heart wasn’t broken.
I feel like I always have a broken heart, figuratively, but I was pleasantly surprised to find it wasn’t broken, literally. He also said I probably didn’t have POTS – that my symptoms would be different.
An all-clear from the cardiologist.
At the neurologist’s office for my follow up, I of course had to wait an hour past my scheduled time for my appointment. At least my dad was there with me.
The neurologist’s assistant did the nerve test – my nerves were fine. Then the neurologist walked in and looked at the results of my MRI – everything looked fine there too.
We came in with a list of questions – a list of conditions that had come up in my research. In his own cruel, curt way, the Night King Neurologist dismissed my questions as quickly as he could, ultimately suggesting I should continue with the psychiatrist and experiment with changing my diet.
Yeah, okay, I said, and rushed out of the office, thinking, where was Arya when you needed her?
I needed something to cheer me up after this appointment too, but I didn’t want to go with a margarita. Instead, my dad and I drove to see my niece Juliette, who can’t help but fill you with joy.
I had a follow up with my primary doctor and we were able to level set about what I could rule out. And the list seemed vast.
Conditions that were crossed off included: vertigo, POTS, MS, cancer, diabetes, and anything else that could have been readily identified. When we discussed next steps, there wasn’t much to discuss.
What doctor would I go to next? Why couldn’t I figure this out? I had crossed almost every bridge — there were a few more alternative doctors and alternative neurologists recommended to me, but how far would I go?
Hadn’t I gone far enough?
Doctor 13: God
The next Saturday afternoon, two full months into my episode, perhaps at my lowest point – unsure what doctor I would see next, wanting to get a massage but knowing it wasn’t in the budget, and out of tramadol – I poured myself some whiskey and decided to take a hot bath, something I usually didn’t do. Maybe this would comfort me.
But it didn’t do much.
In the depths of my weakness, as I lay in the bath naked and hopeless, thoughts started to invade me like a marching army, thoughts I was defenseless against.
You did this to yourself, whatever is wrong, and you deserve it.
You will always be alone. You shouldn’t have ended that last relationship – it was your last chance and you will not find someone else.
You will never get better. Your dreams and your hopes will not come true.
And when there was nothing else in the world I could really do, I turned to see that for some reason my Bible was in my bathroom, I think because I was in the process of moving some books between my bookshelf and my closet. I decided to pick it up.
Maybe God shouldn’t have been Doctor 13, but rather Doctor 1.
I sometimes go to church, but I almost always go to small group on Tuesdays – a group I have been a part of for a few years. I had brought up my ailments there, and they had listened to me and prayed for me. And in my desperate moments I had intentionally prayed to ask for healing myself too.
But to be honest, I hadn’t really opened a Bible in the previous two months.
I read Psalm 23 – and, having memorized it years ago – began to memorize it again, repeating it over and over:
Even though I walk through the valley of the shadow of death,
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me…
Surely goodness and mercy shall follow me
all the days of my life,
and I shall dwell in the house of the Lord
The next morning, I suddenly found myself having the desire to search the scriptures as I lay in bed. I read the book of Job, to go-to for those who are sick or feel like they are losing everything.
In my current situation, I found every reason to doubt.
Even though he was suffering, there was clarity for Job. And in the end, how much did he really suffer? He was restored everything, and the length of time of his suffering was unknown. Some Biblical commentaries said perhaps it was just one month or less.
How could I relate to that? How could anyone who is suffering relate to that?
But in this time of doubting, family and friends of mine – my mother, father, and sister, my friends Colton and Christy in my small group – didn’t press me on the amount of my faith. They sent welcome invitations to hang out and text messages of encouragement, messages of acceptance of who I was.
Colton, Christy, and other friends in my small group invited me to a prayer night at the church. I usually didn’t go there, but I decided to go, because why not?
The elders of the church prayed over me for healing, as it outlines in the Bible in James 5. I knew it may not bring me healing, but I believed somewhere deep down that God can intervene where he wants to. My faith of what is or isn’t true about God wavers, but what doesn’t waver is my belief that I am in God’s hands.
As I got home that day, which either between God or the community brought me a sense of comfort, I decided I would not focus on my list of symptoms, but instead write a list of what I was grateful for.
I had a job I really enjoyed.
I had loving friends and family.
I had a beautiful home.
I had more wealth than most of the people in the world.
I had lived an incredibly privileged life, where I got to travel and experience many things.
And – in the abundance of time I had for reflection while I laid in my bed – I thought about a new addition to my motto:
When the Bible talked about suffering in Job and in James, it isn’t a bad thing. It is something to take joy in.
Maybe to live is to suffer. But then maybe, to suffer is to truly live.
And then I thought:
Maybe my seeking a diagnosis was a microcosm for seeking what was wrong with me in general, what would heal my being as a whole. Maybe the deeper answer I was looking for was in my faith in God.
I went back to the beautiful eye surgeon and he told me that after over a month on the new treatment, the hole in my eye was finally healing, though it would take several more months of treatment before it was fully healed.
Back at the psychiatrist, she prescribed me some antidepressants, to use when needed. This mirrored the prescription I was given a year or two previous, so it wasn’t that big of a change. I had used this particular antidepressant before in a similar way. She said she would be available via email to monitor how I felt.
And my therapist empathized with me and my frustration, and I went on and on about why isn’t life fair, and we explored the idea of acceptance — how do I accept this as my reality? How do I accept what I don’t have as not a curse, but a blessing?
After I filled a couple more prescriptions and paid a couple of more bills, I looked at the excel sheet I was using to track my expenses and noticed I was at my maximum budget.
Sometimes in life all you want is an answer, even if it’s a bad one. All you want is some sort of clarity as to why something is happening.
And sometimes in life, though that’s all you want, it is not something you will ever get.
I had spoken to over a dozen doctors (more than I even listed here) with probably over 250 years of medical experience. I had spent more money on this issue than I care to admit in the American healthcare system.
And I had no diagnosis, nor any clear hints of what could be wrong with me.
I thought for sure throwing money at the problem would solve it – or at least, give me a strong hint. In my mind the only barrier to being healthy and successful was money and effort.
But I had been wrong.
The thought that I hadn’t found an answer yet wasn’t as painful as the thought that I may not ever have an answer.
The stark reality hit me: I was just here – this human being vulnerable to this weakness that could at any point rush into my life and affect all aspects of it. And there didn’t even seem to be a reason for it.
How would I deal with that fact as I moved forward in my life?
As the Texas summer turned into fall, I tried to take a mental rest from all the thinking, the research, the stress. It was time, for now at least, to let go.
I didn’t talk about my symptoms list. I didn’t think about it. I stopped going to therapy.
And as the days passed, I began to feel more normal. The symptoms of weakness faded slowly, as they had during previous episodes.
I began having the energy to hang out with friends again, without a second thought.
One day I felt good enough to go on a walk, so I stepped outside for 20 minutes, and didn’t feel faint or dizzy or weak afterward.
The next day I was listening to the Dan Patrick Show when a realization hit me. He was talking about a case where an athlete was medically cleared by doctors to play in an important game.
I thought about my case. By all accounts, I was “medically cleared” to do whatever I wanted to do. I was sure of the symptoms I had felt, but I took solace in the fact that maybe if I did try to do something – running, tennis, basketball, squats – I wouldn’t die. The MRI, the doctors, would have found something serious if it was there.
That afternoon, I was feeling stressed at my job, whose office is right next to Zilker Park and Austin’s Hike and Bike trail.
I flashed back to my high school and college days, when all I would do is run in situations like this – after hours and hours sitting at the computer and feeling a bit anxious.
And in a moment of defiance against my “problem” – a wave of strength hit me. I didn’t know the origin of this strength, just like I didn’t know where the weakness came from.
I decided: I was going to put on my running shoes and just run.
The fears swarmed me as my legs moved one after another on the trail – what if I induced another months-long episode? What if in a couple of hours I felt completely weak, dizzy, blurry, and depressed?
I part ignored the fears, part combated them with the truth: I have my family and friends and the doctors, and I will be okay. And even if the worst case happens, I have God, who I might not agree with a lot of the time but who might be the one in charge of something greater.
There I ran, step by step. I was so out of shape I had to start walking every couple of minutes. But then I would start running again. And 20 minutes in, despite the fears and doubts, I stood tall and surveyed Austin’s skyline, like an explorer finding new lands, and smiled wider than I had in a very long time.
Back at my office, when I showered and sat back down to do more work, I knew this was when the symptoms usually came on. But I tried not to think about it.
Hours passed. A day passed. I didn’t feel perfect, but I didn’t feel any of these episodic symptoms.
Today, in late November, my corneal ulcer has healed, and I’ve been feeling normal for 2-3 months now. Oh, how much of a relief it is to feel normal!
And this all happened with no clear explanation. I didn’t really change any habits in the long term. Just like previous episodes, this one eventually faded away.
But will another episode happen again in the future?
When I look back on this summer, I’ve learned many things:
Though you may really want an answer to something, sometimes it’s okay if you don’t find it. For me the process was worth it anyway. I didn’t find the answer to the question I wanted – what is the diagnosis? – but I did find other answers along the way.
I learned I wasn’t alone, and this trial helped me build relationships. The more people I talked to, the more I heard people went through something similar.
My sister Christine (who writes over at healthyhopeful.com) has gone through her own undiagnosed health issues. We were able to grow closer by talking about it.
Friends in my small group had dealt with similar things, and I was able to grow closer to them, including Colton and Christy.
I had moments of vulnerability with my parents that I haven’t had in years, growing closer to both my mom and my dad.
And I’ve grown closer to Dr. Brad, my namesake, who has said that he’s there for me if anything arises in the future.
I learned diagnosis isn’t everything.
I learned that up to 40% percent of doctor’s visits don’t get a diagnosis. One doctor simply told me, in regards to my mystery: we don’t know everything yet, Brad.
I learned that many diagnoses – such as a clinical diagnosis – are a diagnosis of exclusion, or that there is no definitive test for it. I learned diagnosis isn’t the end-all be-all.
I learned that maybe, in my search for a diagnosis, I was slightly looking for the wrong thing.
A friend who is a nurse summed it up.
There is a push lately in medicine for a paradigm shift. Good health and wellness used to be considered the absence of disease, but we’re realizing it can and should be more focused not on symptom elimination, but rather equipping patients to cope and live their lives despite their medical or psychiatric ailments. There is definitely a role for diagnostic medicine and testing, but at some point some patients just need acceptance and encouragement, not only from their medical provider but their own heart as well.
I’ve learned to be incredibly grateful, and to not take health for granted.
I heard Joe Rogan say on his podcast: when you are healthy you want a million things. When you are sick, you want only one thing.
For me, now, I have to pinch myself and be grateful for being healthy in this moment. That right now it is good I’m wanting a million other things, because this summer I only wanted one thing.
And, of course, I know my condition could be exponentially worse. There are entire blogs written by those who are suffering from illnesses more serious than what I went through.
I’ve learned just how fragile I am, how fragile all I hold dear is.
Why hold on so closely to my time, my love, and my belongings when life is so short and health so fragile?
I’ve learned to have empathy, even with borderline hypochondriacs.
Because of the support my friends showed me when I was down, and nothing but a voice of complaints, I’ve made a pact to always be there for them.
Empathy wasn’t my strong suit before, but now I want to be there for anyone who says they feel unwell, even if they are on the edge of being dramatic. I can be dramatic too, after all.
And through this, I’ve recognized the importance of people, and I’ve made a new rule not to cut anyone out of my life, going as far as reaching out to people I had poor final interactions with in the past to make amends.
Life is too short and fragile to proceed otherwise.
I’ve learned healing is a process.
Sometimes the process of healing isn’t quick or isn’t linear, and sometimes it doesn’t really make any sense.
(Back to my motto)
Finally, I’ve learned:
Yes, for many, to live is to suffer. And to suffer is to live.
But for me, I’ve learned, despite any suffering, to live is a privilege.
Will another episode happen in the future?
I feel healthier now than I have in a long time, but I have to fight the fear each day that one of these episodes will start again. I am still afraid to do some activities – like weight-bearing leg exercises and tennis – because of the episodes that have followed in previous years that brought me trauma.
Perhaps one day another episode will occur. Or one day I will face a greater trial – possibly even a more serious illness.
But no matter what, I have the lessons I learned this summer. I have my friends and family. I have a team of doctors. And I have God, who may not save me on this earth but I hope will save me in the end.
An obligatory thank you to those who supported me through this – you know who you are. I will always be there for you.
What is your medical mystery, or something you want an answer for but don’t have? Email me at firstname.lastname@example.org if you want to discuss.