Posted on by bethanypasma

Psalm One

Afternoon church services in my childhood would start with a hymn sing, and the organist would choose and announce these songs before the pastor got up and officially began the service.  Especially exciting were the times that the organist would be confident in his ability to sight-read anything the congregation would throw at him, and would allow people to suggest hymns instead of choosing them in advance.  

In my head I would always chant to those around me, “Choose number 1!  Choose number 1!” I never would have dared to request it myself. But that first song in the hymnal held such a fascination for me.  What could song number one be about?  

One spring day, Dad had to do some fieldwork, and it was my turn to ride inside the tractor with him. As the tractor made its way through the fields, I told Dad how I wondered what song number one was and how I hoped that someone would choose it for a hymn sing.  I shared this probably hoping Dad would request it the next time it was a brave organist playing for the hymn sing.

Dad did something way better. He sang for me then and there.  

“That man is blest who, fearing God, 

from sin restrains his feet,  

who will not stand with wicked men, 

who shuns the scorners’ seat.”

 

He sang it for me until I knew the first verse from memory.  And while it was a psalm we did not sing often in church, it has remained for me a favourite one.  And Psalm One was a natural choice for me to memorize in its entirety later in life. The image of the tree, planted by streams of water, that yields its fruit in season and whose leaf does not wither – that was easy imagery for a farmer’s daughter to understand.  

What made it stick, though, was the example of my godly parents, who spent time reading God’s word, who prayed with their kids, for their kids, and on their own. Parents who talked about their faith, who sat at the dinner table long after the meal was done to answer questions that had come up in the Bible reading.  Who expressed their faith that God would use all things in our family to his glory and grace, even when we couldn’t see how that was happening.  

My parents are truly Psalm One people.

He is like a tree

planted by streams of water

that yields its fruit in its season,

and its leaf does not wither.

In all that he does, he prospers.

Psalm 1: 3

Posted on by bethanypasma · 5 Comments

Life with Pheochromocytoma

I have a pheochromocytoma, and it really, really sucks. I’m writing today from deep in an episode. My hands are shaking so much that it is taking some time to type the correct keys, and my brain feels extremely wired but it’s making it hard for me to keep one single train of thought going for too long. 

Today is probably my last acute episode. They tend to happen every two months or so, and I’m 27 days out from surgery. [Insert dancing and shouts of “Hallelujah!” here.] I just absolutely cannot wait to have surgery, and I know I’m going to be okay. But today isn’t okay. 

It’s actually loads and loads better than what it used to be when I’m in the acute phase. Medication is doing its job. But with some 20 times the normal level of adrenaline coursing through my body, medication can’t prevent all the symptoms. 

It took me a long time to get a diagnosis, and I haven’t been able to find a whole lot of people’s stories online. But the ones that I’ve found and read have given me a sense of solidarity, a sense of understanding I’d been looking for. So I thought maybe I’d write a bit of my own story here, and maybe someone will find it and it will give them hope. 

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Some quick basics about Pheochromocytoma for you

My story actually stretches back to about four years ago. Somewhere around there, I started having these weird moments where I would wake up feeling shaky and with a weird feeling like a pit in my stomach. I thought it was low blood sugar. I would eat, and the feeling would eventually go away. I told my doctor, and she had me do a fasting glucose test. It came back as normal, and she told me I was fine. That was the end of it. 

I kept having the feeling, though. Eventually it wouldn’t really go away after I ate. Then in June 2018, I woke up with it, went to school and taught all the way through it, came home, and threw up. And threw up. And threw up. And then in September, the same thing – only with chest pain and a sense that my heart was pounding. When you work at a school, there’s pretty much always some kid who’s going home because they’re throwing up. It’s pretty easy to blame it on a stomach bug. 

But then the same thing happened in November, and I realized this was a pretty solid pattern. I took myself to a hospital ER, where two nurses and a doctor suggested that I was having a panic attack. The doctor actually came back and apologized when he saw my lab work – my results all showed something very wrong and he told me apologetically that they wouldn’t be able to discharge me. I cried both out of relief and frustration – it was the day of parent-teacher conferences and I didn’t see how I should have to miss those… I knew that if the pattern continued, I would actually feel okay again in a couple of hours. Okay, more like most of the day. 

I ended up being transferred to another doctor who was very empathetic and who I felt really listened and asked thoughtful questions. With the vomiting, pain, and high levels of inflammation from my bloodwork, she suggested gallstones, and I was eventually given an ultrasound which confirmed that I do have a gallstone. 

I left the hospital with a sense of relief, booked an appointment with my family doctor, and discussed a referral to a surgeon. I couldn’t believe how quickly that referral happened, and I went to the surgeon with nervous excitement. He looked at my labs, asked me some questions, and very quickly told me that my problem was not gallbladder related. Back to square one. 

The next six months were a cycle of feeling totally fine until an episode, then waking up with a sense of dread when the next one started, and either deciding to go to the hospital where I would eventually be sent home with a sort of metaphorical shrug of the shoulders or deciding to just stay home and tough it out. By June, I was gathering a medical file of all of my tests, ER visits, and my own data. I was being referred to numerous specialists who would basically say, “Whatever it is, it doesn’t seem like it’s in my field…”

The summer was a lovely break, and I felt good. I completed a summer course, went to Guatemala, took my parents on a road trip, went church camping, and everything was good. I returned to school, sat through teachers meetings, set up my classroom, met parents and students at our open house, and I felt good. Then the morning after the open house, I woke up and symptoms had started again. I woke up actually thinking I had a migraine. I took an Advil and went back to bed, texting my parents that I wouldn’t be coming to see them that day. I woke up an hour later and realized what it really was. My hands were shaky. I felt like I had a pit in my stomach. I couldn’t shake the sense of dread. As the day wore on, I felt extremely wired, like I couldn’t sit still. Eventually, I felt the band of pressure tighten across my chest. It felt like my heart was beating hard, working for every beat. Soon the vomiting started, and it wouldn’t stop. I decided I wasn’t going to the ER – it didn’t feel like the ER did anything for me anyway. It was just hours of torture and waiting and vomiting, and doing it in front of other people instead of in the comfort of my own home where at least I could alternate between couch and bed and bathtub and had Netflix to sort of distract me out of my misery. 

But it was bad. It was really bad. It amazes me that this condition can take you from feeling perfectly healthy and good to I might die at any moment in a few hours. So eventually I went to the hospital, taking my folder of medical files along with me. The ER doctor was so kind, and when he started asking questions and I pulled out my files to show him answers, he wasn’t annoyed. He sat on the edge of my bed and paged through my files, occasionally asking questions. I would point him to answers in my file. He said to me, “We need to get someone smarter involved here. Whatever this is, I am out of ideas.”

Enter my new doctor, internal medicine. He came to see me in the early morning hours. He also paged through my files, asked me multiple questions, went and did some thinking and research. He came back again to talk to me around 9 in the morning. He had some ideas he wanted to follow up on, and he told me I could stay for some testing, but with it being Saturday on a holiday weekend, he said I would probably not be able to get the tests done that day. I knew my symptom pattern well and my chest pain was lessening and heart palpitations were decreasing, so I knew I would actually be able to go home and sleep. We agreed that I would come into the hospital for an appointment to see him. But before I left, he gave me a note with the word pheochromocytoma on it. 

Let me summarize the next two months: multiple hospital visits. Approximately one a week. Testing, follow up testing, different testing. By the end of September, I had the results back which indicated pheochromocytoma was very likely, also meaning I could take the right medication. By the end of October, I’d had an MRI. By the beginning of November, I had my final follow-up with the internist and was under the care of an endocrinologist, referred to surgery. Now that we knew what to test for, we could run testing while I had symptoms and very easily discover the results – the crazy amount of extra adrenaline coursing through my system. In December, I had a consult with the surgeon. At the end of January, I received a surgery date. Now here we are, 27 days away from surgery. 

Pheochromocytomas are extremely hard to diagnose. They often come with high blood pressure, sweating, and headaches, which could be attributed to any number of conditions. Panic attacks are an actual symptom of the condition. This makes me feel approximately 1% more gracious to the nurses and doctor who suggested that I was having a panic attack. But it makes me even more grateful and amazed by the doctor who suggested it to me before I had even left the ER on my last ER visit. 

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This take on a pheochromocytoma amused me. Pretty accurate for the “typical” pheo… not exactly my symptoms though.

You may be familiar with the saying, “When you hear hoofbeats, think of horses not zebras.” This aphorism was created by Theodore Woodward, a professor at the University of Maryland School of Medicine to remind medical students to choose the common explanation over the exotic one when it comes to diagnosis. In fact, neuroendocrine diseases use a zebra-patterned ribbon to represent this exact idea – that sometimes the explanation of the hoofbeats actually is the zebra. 

The incidence rate of pheochromocytomas is somewhere around 2 per 1 million people. However, many researchers think that number may be quite low since many pheochromocytomas aren’t found until autopsy. The average time from onset of symptoms to diagnosis is three years. This all just makes me even more grateful and amazed to have received a diagnosis. 

So I’m getting through this awful day by counting my blessings. 

I’m so very grateful for the diagnosis that reassures me – no more wondering if I’m going to die. 

I’m so very grateful for the medication that diagnosis provides – symptoms are present but manageable, especially compared to previous episodes. 

I’m so very grateful for universal health care. I’m not hundreds of thousands of dollars in debt. When I pondered not going to the hospital, it was never because I couldn’t afford it. 

I’m so very grateful for a doctor who not only diagnosed me, but provided the most excellent patient care while we searched for a diagnosis. 

I’m so very grateful for friends who prayed for me, who took care of me, who texted to see how I was, who gave rides to or from the hospital. 

I’m so very grateful to God for being with me through all of this, using it to teach me more about who God is and who I am. 

Posted on by bethanypasma

Dayenu

Dayenu is a Jewish song for the Passover. If tells of all the things God did for the people of Israel, saying essentially, “That alone would have been enough.” 

Thanks to one of my wonderful colleagues for introducing this at a recent staff devotions. 

Here’s my own take based on most recent events in my life. 

 

 

If God had provided me with just a diagnosis and no cure, 

It would have been enough. 

But God gave me a diagnosis AND a cure AND medication in the meantime. 

 

If God had provided a cure for my diagnosis, 

It would have been enough. 

But God blessed me with the most perfect time for surgery that only he could have arranged.

 

If God had provided for time off to recover, 

It would have been enough. 

But God provided a student teacher to help take care of my beloved students. 

 

If God alone had taken care of me during my journey, 

It would have been enough. 

But God surrounded me with a wonderful loving community who care for my mental, emotional, and physical needs. 

 

If God had prevented me from developing my condition in the first place, 

It would have been enough. 

But God used it to show me who God is, to teach me to trust more deeply, to receive the kindness and love of others, to follow God’s leading. God used it for good in the way only God could have. 

 

God could have provided just enough. 

Instead, God provided overflowing abundance and goodness. 

Posted on by bethanypasma

Violin Lessons

I closed my eyes and let the sound of Vivaldi’s Four Seasons bloom around me, the hisses and pops of the record player almost loud enough to be felt. Mom said yes! I smiled to myself. After years of wanting to play the violin, years of begging my mom to get a violin, years of being told to practice the piano instead… my mom had just told me that I would be getting a violin for my birthday. I leaned into the music… letting the trilling sounds of the bird float around me. Soon that will be me, I thought. Soon I’ll be strumming away, bow sweeping through the air, fingers flying. 

 

 

I sighed and let my arm fall to my side, holding my violin with just my chin. Learning to play was harder than I’d thought. Even after a year of lessons, when I practiced for long periods of time, I would just need to shake out my arm and give it a rest. My thumb absentmindedly caressed the small calluses that had formed on the fingers of my left hand. There were signs that I was growing. I could play hymns from the psalter hymnal now, the big songbook that we used in church. My dad could even sing along with me when I did so. 

“Beth! Mom says dinner’s ready!” my younger sister Karianne called from downstairs. Reluctantly I put down my violin. I would need to finish practice after dinner. I hadn’t yet mastered the new hymn I was learning. Four flats! I thought in annoyance. Why did they print the song in Ab? I thought. I carefully laid my violin inside its case. Even though I would be back right after dinner and dishes, I still took the time to gently and lovingly wipe the excess rosin powder off my violin and loosen the horsehair strings of my bow.

 

 

“Beth, get your shoes on! We need to leave now!” Hearing my mom’s voice, I quickly shoved the book I was reading into my backpack. It would get taken away if I kept reading it and didn’t get ready to go right away. 

“How long does it take to get to St. Thomas, Mom?” I asked. My beloved violin teacher had gotten married and moved away during the summer. This was my first day with a new teacher. My mom had called around everywhere, trying to find someone good for me. This was the closest teacher we could find who came highly recommended. 

“It’s at least half an hour. And I’m exactly sure where it is. We need enough time in case we get lost.” Like me, my mom was a big fan of getting to places early. Maybe I had actually learned it from her. 

 

 

“My name is Pieter,” said the big man in front of me. I was a little shocked. My old teacher had been a petite blond lady, nothing like this hulking, hairy giant, speaking with a thick accent. I timidly entered the room and put my violin case down, opening it and starting to prepare it to play. Getting it ready was a calming ritual, a feeling as familiar as home. I picked up the violin, turned it over in my arm, and slid on the shoulder rest, all under the watchful eye of my new teacher. 

“No, not like that,” he said brusquely. His voice boomed in the quiet of the room, all blank wooden walls. I looked up, puzzled. This is how I always put on the shoulder rest. How can I be doing that wrong? It feels right when the violin is on my shoulder! 

Pieter’s large hands picked up the violin from mine, surprisingly deft, and he slid the shoulder rest around an infinitesimal amount. “See?” I did not see how his position was any different from mine. 

Carefully, I laid the violin on the table beside the case. I flipped open the small compartment and grabbed the block of rosin, and then turned the piece of plastic holding my bow in place in the top of the case. For a moment I juggled both the bow and rosin while trying to tighten the hairs on my bow. I was flustered, being watched with Pieter’s eagle eye. Suddenly each step of the routine felt awkward and new, not the familiar friend I was used to. What are you doing, Beth? I asked myself, annoyed. You should be able to do this in your sleep!

Pieter watched as I tried to complete the task. I could feel the heat creep up in my cheeks and knew my face was turning red. I finally put the block of rosin down on the table, grasping my bow in both my hands. I turned the metal end 8 times, like usual, then tested the springiness of the horse hairs, pressing them against the back of the bow. Perfect, I thought. I picked up the rosin again. 

“No, no.” I flinched involuntarily at the big voice in my ear. Again, Pieter reached for my bow. He loosened the hairs ever so slightly, then held the bow out in front of himself, analyzing it critically.  “Yes.” He nodded, looking very pleased with himself. “You see?” 

I did not see. How is that any different from what I had before? I wondered. I sighed internally, not sure what he was asking me to notice. I took the bow back into my hands, holding it my left, the block of rosin in my right. Swish, swish, swish, swish. The rosin sang its nearly imperceptible song as it swept along, up, down, up, down.  I put the block down. 

This time I was ready for the voice from behind me. “No. More here.” Once again, the bow was lifted out of my hands. Once again, he swiped rosin just along the end of my bow. Swish, swish. “Like so.” 

Each moment of the lesson continued as it had begun. I stood to play, feet planted, and lifted the violin to my shoulder. “No, move your foot like so.” I raised my right arm to sweep the box down. “No, lift your elbow like this.” Pieter asked me to play a G scale. Easy, I thought. First scale I learned! Now he’ll see that I can play. Pieter stopped me after two notes. “Your fingers. Why do they clench like this? Loosen them. Let them dance.” He picked up his own violin and his fingers danced up the fingerboard, bow sweeping through the notes of the scale. He finished with a flourish, the final notes ringing in the room around us. My chest tightened. I don’t sound like that yet, I thought. I took a deep breath, holding my violin with my chin and wiping my palm on the leg of my jeans. Take two.

Again, I was stopped three notes in. I could feel the tightness in my throat, the burning in my eyes that meant tears were on their way. I’m better than this, I thought. Why can’t he just let me play? Again, Pieter showed me a tiny change to make. The first tear slipped out of my right eye, and I felt its hot trail all the way down my cheek. I turned slightly away so that he would not see it trickle down. This time I made it to the top of the scale before being stopped. Again, Pieter demonstrated a change in bowing he wanted me to make. I lifted my violin and began, my eyes overflowing and tears streaming down both cheeks as I blinked and sniffled. At least I have the scale memorized, I thought morosely. I don’t need to look at any music.

“Why you cry?” Pieter’s voice cut through my silent pity party. 

I just stared for a moment. Because you are correcting me at every single step. Because apparently I can’t do anything right. Because this is my dream, but apparently it’s actually a nightmare. Because you don’t seem to see or care that I actually know what I’m doing! For a brief second I considered speaking these thoughts aloud, imagined hurling the words at him like little daggers of self-defense. But I knew that speaking would turn the tears trickling down my cheeks into actual sobs. Instead, I shook my head, angrily brushed away the tears from my cheeks, sniffed, and lifted my violin again, part defiance, part stubbornness, part desperation to just get through this lesson and then tell my mom I wanted to quit. 

The lesson seemed interminable. 

 

 

“Okay, Beth. Tell me once and for all why you’re crying.” My mom had asked several times during the drive home, but I had sat stubbornly, face turned to the window, tears trickling down my cheeks silently as the fields slid by outside of the van. My dad had asked too, coming to meet us when we arrived back home, the surprise showing on his face when I slid out of the van, refusing to talk, only going inside and lying down on my bed. Lunch was done, dishes were finished, and my mom had called me to the living room alone, away from all of my siblings. I knew I wasn’t going to get out of this one. 

“Because… because…” Immediately, the chest tightness, the ache in my throat, the sting in my eyes all rushed back in. “Because I actually CAN play the violin, and Pieter just wouldn’t let me!” I was now nearly shouting through my tears, great heaving gasps of air rushing in and out of my lungs between phrases. “Because he wouldn’t just let me play! Because every single thing I did was wrong! I thought I was good at that, but I’m not and I hate it and I never want to take lessons again and I don’t want to play ever again!” The last words came out in a rush and surprised even me. I knew even as I said them that they weren’t true. But my dreams of being a concert violinist seemed dashed, broken, lying in pieces on the floor around me. 

My mom sat back in her seat. A smile played around her lips. “Oh, Ashes,” she said, her favourite nickname for me. “You don’t take lessons for things you can already do! You take lessons because you need to learn something!”

“Yes, but he’s making me do all the things I knew already! I can’t do any of it right!”

“Does Pieter play better than Marijka did?” Mom asked thoughtfully. 

I flopped back in the couch, crossing my arms begrudgingly. “Yeah, but -” 

Mom cut me off. “Then he will teach you well.” She got up. Clearly in her mind the conversation was over. 

“But Mom! Didn’t you hear me? I can’t… actually… play!” I emphasized each word clearly, trying to stress the importance of this to my mom, who didn’t seem to understand. 

“Exactly, Beth. That’s why you’re learning. Why don’t you go practice what you covered in your lesson today before you forget the finer points?”

 

 

I picked up the violin out of my case, slipping on the shoulder rest just so. I twisted the end of my bow, gauging how much curve there was in it. The rosin swished across, up, down, up, down, up, down. I planted my feet, raised the violin, and began playing, the sounds of the Bach Minuet filling the air around me. It wasn’t Vivaldi’s Four Seasons, but four months with Pieter had me sounding better than ever. I would get there. With enough practice and hard work, I would get there.