The New Walk
This bright, almost spring-like afternoon finally feels like the right time to pull back the curtain and let many of our friends in on the journey we've been taking as a family in the past months. It's unusual for me to hold back and not write. I don't have a long list of good reasons for why I haven't, except to say that sometimes the valley hits very close to home. We've needed this time--first just God and I, then Micah and I, and slowly more and more of our family and friends--to sort out many layers of the story that's been unfolding. For a long time I wasn't sure what kind of story it was at all. But as we sit in another in-between space, the sun finally shining through the windows, it seems like the right time to share my heart.
Several months ago now, back in the fall, I developed almost constant headaches. At times I would have difficulty focusing my eyes. I would squint and blink and stare at a page, desperately trying to bring the letters in front of me into clear focus. Around the same time, I began to drop things--all kinds of things. I stubbed my toes, hit my hands on door frames. I was generally uncoordinated--which is to say, I was more uncoordinated than usual. I discovered that my blood pressure had increased again, and so made a phone call to my cardiologist to dig deeper into the possibility of headaches and symptoms related to blood pressure. I was placed on a new medication, and hoped that would be the end of the story. But it wasn't.
After almost a month on the medication, my blood pressure was sometimes improved, but the headaches and other symptoms were as bad as ever. I sometimes had trouble forming words, and we joked that I might be suffering some kind of illusive stroke. I finally called my doctor to be evaluated. I didn't expect to find much, but my wonderful doctor was very thorough: a head CT, xray of my neck, brain MRI, and lab work.
Within a week of my first appointment with her, I was sitting on the couch with Micah. Suddenly what felt like a band wrapped around my left leg, and it went completely numb. I could wiggle my toes and feel deep pressure, but I had absolutely no sensation on the outside of my leg. It lasted for a few hours, then suddenly the feeling was back. Just as quickly, the same thing happened in the right leg. This time the sensation lasted overnight and into the next day. I tried hard not to panic as I began to wonder whether this could be something more serious. The next evening, I sat down with a hot cup of tea. As I was getting positioned, some of the tea splashed out and onto my right leg. It burned! I looked up at Micah, "Well, I have good news and bad news! The good news is, the feeling is back in my leg. The bad news, it was just in time to spill my tea."
Being a self-respecting nurse, I had begun to put some pieces together. While I didn't have much to go on, I had enough to know this could be something more serious than the occasional headache and a lack of coordination. Words like multiple sclerosis became a frequent part of our conversations. All of my symptoms were worse on days when I was very stressed, and so the word autoimmune became more and more of a likelihood as well. We braced ourselves, waiting for the results of the initial tests.
Within days of the first episode of numbness--which continued to come and go unexpectedly-- I developed weakness in my legs. It was a difficult feeling to describe. As I tried to put it into words for Micah, I found myself fumbling for comparisons. "It's like when you flex the muscle for a long time and it feels weak afterward--that's how it feels. Or how you feel shaky when you have the flu. Or like that deep muscle ache you get with shin splints, only it's all over my body at different times, and mostly in my legs." I began to walk around less and less. I found that if I stood or walked for any length of time, the symptoms were worse. Sometimes, after a long day, it felt like my legs had been dipped in cement, and I could barely drag them along. We bought a cane, and agreed that if I never had to use it, we'd donate it and celebrate. But I did use it, in the evenings after a full day of work, or on days when I'd been on my feet for a long time. It gave me some stability and strength when I felt as though I was lacking both.
The possibility of living with something like MS began to become more and more real. I couldn't keep myself from researching, and what I discovered was devastating. This disease would affect almost every part of my life: my mobility, my brain function, my work, my family, even my bowel and bladder function. How, as a 33 year old woman, would I function with this level of disability? Would I continue to work? What would this do for my children? What about my husband? I didn't want to be his patient, I wanted to be his wife! And what about simple things, like driving a car, or climbing the stairs in our house, or cooking a meal? How would this look for us?
Pretty early on, I sat down and prayed, "God, if we're going to do this, I want to do it for your glory. How do we make this work? How do I reflect you in the face of something like this?" I became convinced--and still am convinced--of good things as a result of this. For one, I knew this was a beautiful picture for my children of what it would mean to accept hardship without playing the victim, or the martyr. How I lived this out would teach them how to live out hard times. I also knew it would teach them empathy and compassion. No other lesson would be as visible to them as this. I've been so passionate about addiction recovery and wholeness, and I wondered how that work would be affected by an illness like this; and yet, I understood early on that my own battle with a chronic illness would make anything I had to share with someone struggling with addiction--a chronic illness in itself--so much more poignant and genuine. Maybe my being broken by something like this was a door to reaching others who were also broken. I told my mom in all honesty one day, "I will never want this, but I can embrace it. I can already see some of the good that could come of this."
And that was, and is, truly how I feel. I can walk into this boldly, knowing that there is good even in that kind of darkness. At the same time, we are not robots. We are people with hearts and lives and hurts, and mine were being affected more deeply each day. After one particular afternoon, when I had done a little more research than I should have, I was suddenly overwhelmed by how completely some of these diseases on the table would affect my life. I laid face-down on the basement floor and prayed, "God, this is going to ruin me, isn't it? This is going to take every part of my life. I don't want to lose my mind, I don't want to lose my hands. I--I can't do this! God, where are you?" That day I cried so hard, my nose bled. But it was the beginning of something new. I had been quick to put a veneer on what was happening, to tell God, "Let's make this look good for you." From that day forward, the journey was a little different, a little more raw. I suddenly realized that if I was going to do any of this, I was going to need help. Both physically and spiritually, I was weak and becoming more and more weak. I couldn't do this by willpower or good intentions or strength of character. God hadn't felt close, because I'd been playing God. What he gave me instead was a very powerful image. I pictured myself in the water, drowning, thrashing and flailing in the waves. The harder I swam, the more I became exhausted, and the more quickly I began to sink. It was as though he said to me, "The only way to be rescued this time is to roll over onto your back and let go. If you stop thrashing and flailing and open your arms, you will float on your back--and you will not drown." Friends, sometimes doing nothing to save ourselves takes more courage and strength than all the action in the world.
Slowly, the results of the testing trickled in: my labs were all normal. The CT and xray were normal. The one that would be most revealing, and most indicative of the thing I was fearing most, was the MRI. The results finally came through on our patient portal on a Sunday afternoon. We were driving home from church when I saw them come in. I couldn't open them then--not in the car, with the kids and everyone around. We hurried home, got the kids some lunch, and went upstairs. My hands shook so hard I could barely turn on my phone. While we'd had "close calls" health-wise in the past, we both agreed this time felt different. This time God wasn't just going to bring us to the brink of something and then spare us. This time we were going to walk through the waters. I opened the MRI results fully expecting to see the tell-tale signs of MS: lesions on my brain. I skimmed the document quickly, looking for the words. But they never came. The study concluded with the words, "Unremarkable imaging of the brain." It was normal.
In the immediate moment, I felt numb. I had been so bracing myself for this, that I didn't know how to feel. Eventually, I felt relief. Multiple sclerosis would have been so difficult. And yet, I had these symptoms, these problems--what should I make of them? The relief was one that was filled with tension. There was still something there. And we were no closer to discovering what it was. A fear I'd been stifling all along began to seep in, one that was honestly harder to grapple with than the fear of disability: what if this is nothing? What if my mind is so broken that all of these symptoms (the list grew daily), which feel incredibly real, are nothing more than my mind leading me astray? That single thought gave me feelings of outright panic, in all honesty, and kept me from sharing the journey with others for many weeks. I was terrified that there would never be a reason for this, that it would mean I couldn't trust my own mind.
Again, that image of the water came to mind. Regardless of the outcome, I knew I couldn't hold onto this fear. It was dragging me down. I had laid down my deepest fears in this journey, one after another, and told God I would accept whatever came from his hand, with his help. This fear of nothing was the last piece I was holding onto with white knuckles. "God, I'll face any diagnosis--only don't let it be nothing this time. I don't want to walk through illness, but I'm more afraid of what this would mean for my mind. I want to know I can trust my own thoughts, that my mind is not the problem here." Our God is a God who is interested in having all of us, and I wanted to be able to give all of myself without holding back. This fear, too, had to be laid down. It was the most terrifying moment of the journey, and took me the longest to reach, but I surrendered even that fear. "God, even if there's nothing here, I trust you. I can trust you." I let go and rolled over onto my back.
Since my initial visits with my doctor hadn't revealed any answers, I was sent on to a neurologist. Appointments with specialists of this kind are difficult to come by. The next open appointment here in town was in April, so I opted to see a doctor out of town. I had a month and three days to wait from the time I made my appointment to when I actually saw the doctor. I don't have to describe how agonizingly long those days felt. In the meantime, my symptoms continued to progress. I went from the occasional "bad day" with weakness in my legs, to having some kind of symptom every day. Sometimes I woke up with the weakness, sometimes it developed over the course of the day. But it was always there. I was so tired, always. I would stumble home from work desperate to lay my head down. I struggled to wake up in the mornings, and often fell asleep on the couch. There were myriad other symptoms that developed, and each one brought with it the cycle of fear, acceptance, and eventual peace. Each was hard-won.
The neurology appointment finally took place last Tuesday. Micah took the day off of work and went with me. I didn't know what to expect, but hoped for answers, for something. The doctor brought us into his office and the first words he said were, "Welcome to neurology. This is about how it always goes: you have all kinds of symptoms, and completely normal labs and tests. It's frustrating, isn't it?" He was one of the kindest doctors I've ever met, listening to us describe things, talking through the possibilities, and laying out his plan for further testing. His first step would be more lab work to narrow down the cause--there was no use in putting me through the discomfort of things like EMGs and lumbar punctures if there wasn't a need. I was more than happy with his plan. We left the appointment feeling tentative, but reassured.
By Thursday, the results of some of my lab work were in. Again, my hands shook as I opened the results on my phone. Vitamin B12 levels: normal. CPK: normal. In fact, it was all normal until I reached the last result. ANA: positive. I read it four times. Positive. Positive ANA most likely meant this was an autoimmune disease. It was something. God had graciously given me something to confirm that this was real, and not just my imagination. It's hard to understand, but I was unbelievably relieved.
That afternoon, the neurologist himself called me. He went through each lab result, then discussed the ANA. "I'm used to seeing results that are mildly positive, and could even be caused by infection. But yours is really high--you probably know that--which makes me think this is likely an autoimmune disease. I want to send you to a rheumatologist to figure out exactly what is causing this."
Now new words were thrown on the table, words like myasthenia gravis, and systemic lupus erythematosus. New words that signal new possibilities for diseases that will affect me daily--that may even affect the length of my life. It goes without saying that now, in another in-between space, we continue to grapple with the possibilities. But we also grapple with the realities: fatigue that is debilitating some days. Dizziness that leaves me nauseated. Headaches that make me want to crawl under the covers. And, most impactful, weakness that leaves me unable to stand or walk for much time at all. Last week I used my cane for the first time outside of our house. It was incredibly humbling. And yet, we're determined to meet this challenge with humor and lightness whenever possible. My cane is covered completely in red flowers--it will be as much a fashion statement as it will a mobility device.
So, the curtain is pulled back. The words I've struggled to find in these last months are now out in the open. We continue to walk this road--sometimes with a cane, or an arm tucked firmly into Micah's--and wait for our answers. As you see us, please don't hesitate to ask how things are. The hardest part for us has been introducing this topic, but we love to talk about the journey, the struggles, the joys, and the challenges. My hope is that our friends will not hesitate to talk to us about this. And if you see me with my incredibly fashionable cane, know that it's a day when I need a little more support for my sea legs. Now that the words are out there, we will be able to share the journey more openly moving forward. We will watch and see how the rest of this story unfolds...
Several months ago now, back in the fall, I developed almost constant headaches. At times I would have difficulty focusing my eyes. I would squint and blink and stare at a page, desperately trying to bring the letters in front of me into clear focus. Around the same time, I began to drop things--all kinds of things. I stubbed my toes, hit my hands on door frames. I was generally uncoordinated--which is to say, I was more uncoordinated than usual. I discovered that my blood pressure had increased again, and so made a phone call to my cardiologist to dig deeper into the possibility of headaches and symptoms related to blood pressure. I was placed on a new medication, and hoped that would be the end of the story. But it wasn't.
After almost a month on the medication, my blood pressure was sometimes improved, but the headaches and other symptoms were as bad as ever. I sometimes had trouble forming words, and we joked that I might be suffering some kind of illusive stroke. I finally called my doctor to be evaluated. I didn't expect to find much, but my wonderful doctor was very thorough: a head CT, xray of my neck, brain MRI, and lab work.
Within a week of my first appointment with her, I was sitting on the couch with Micah. Suddenly what felt like a band wrapped around my left leg, and it went completely numb. I could wiggle my toes and feel deep pressure, but I had absolutely no sensation on the outside of my leg. It lasted for a few hours, then suddenly the feeling was back. Just as quickly, the same thing happened in the right leg. This time the sensation lasted overnight and into the next day. I tried hard not to panic as I began to wonder whether this could be something more serious. The next evening, I sat down with a hot cup of tea. As I was getting positioned, some of the tea splashed out and onto my right leg. It burned! I looked up at Micah, "Well, I have good news and bad news! The good news is, the feeling is back in my leg. The bad news, it was just in time to spill my tea."
Being a self-respecting nurse, I had begun to put some pieces together. While I didn't have much to go on, I had enough to know this could be something more serious than the occasional headache and a lack of coordination. Words like multiple sclerosis became a frequent part of our conversations. All of my symptoms were worse on days when I was very stressed, and so the word autoimmune became more and more of a likelihood as well. We braced ourselves, waiting for the results of the initial tests.
Within days of the first episode of numbness--which continued to come and go unexpectedly-- I developed weakness in my legs. It was a difficult feeling to describe. As I tried to put it into words for Micah, I found myself fumbling for comparisons. "It's like when you flex the muscle for a long time and it feels weak afterward--that's how it feels. Or how you feel shaky when you have the flu. Or like that deep muscle ache you get with shin splints, only it's all over my body at different times, and mostly in my legs." I began to walk around less and less. I found that if I stood or walked for any length of time, the symptoms were worse. Sometimes, after a long day, it felt like my legs had been dipped in cement, and I could barely drag them along. We bought a cane, and agreed that if I never had to use it, we'd donate it and celebrate. But I did use it, in the evenings after a full day of work, or on days when I'd been on my feet for a long time. It gave me some stability and strength when I felt as though I was lacking both.
The possibility of living with something like MS began to become more and more real. I couldn't keep myself from researching, and what I discovered was devastating. This disease would affect almost every part of my life: my mobility, my brain function, my work, my family, even my bowel and bladder function. How, as a 33 year old woman, would I function with this level of disability? Would I continue to work? What would this do for my children? What about my husband? I didn't want to be his patient, I wanted to be his wife! And what about simple things, like driving a car, or climbing the stairs in our house, or cooking a meal? How would this look for us?
Pretty early on, I sat down and prayed, "God, if we're going to do this, I want to do it for your glory. How do we make this work? How do I reflect you in the face of something like this?" I became convinced--and still am convinced--of good things as a result of this. For one, I knew this was a beautiful picture for my children of what it would mean to accept hardship without playing the victim, or the martyr. How I lived this out would teach them how to live out hard times. I also knew it would teach them empathy and compassion. No other lesson would be as visible to them as this. I've been so passionate about addiction recovery and wholeness, and I wondered how that work would be affected by an illness like this; and yet, I understood early on that my own battle with a chronic illness would make anything I had to share with someone struggling with addiction--a chronic illness in itself--so much more poignant and genuine. Maybe my being broken by something like this was a door to reaching others who were also broken. I told my mom in all honesty one day, "I will never want this, but I can embrace it. I can already see some of the good that could come of this."
And that was, and is, truly how I feel. I can walk into this boldly, knowing that there is good even in that kind of darkness. At the same time, we are not robots. We are people with hearts and lives and hurts, and mine were being affected more deeply each day. After one particular afternoon, when I had done a little more research than I should have, I was suddenly overwhelmed by how completely some of these diseases on the table would affect my life. I laid face-down on the basement floor and prayed, "God, this is going to ruin me, isn't it? This is going to take every part of my life. I don't want to lose my mind, I don't want to lose my hands. I--I can't do this! God, where are you?" That day I cried so hard, my nose bled. But it was the beginning of something new. I had been quick to put a veneer on what was happening, to tell God, "Let's make this look good for you." From that day forward, the journey was a little different, a little more raw. I suddenly realized that if I was going to do any of this, I was going to need help. Both physically and spiritually, I was weak and becoming more and more weak. I couldn't do this by willpower or good intentions or strength of character. God hadn't felt close, because I'd been playing God. What he gave me instead was a very powerful image. I pictured myself in the water, drowning, thrashing and flailing in the waves. The harder I swam, the more I became exhausted, and the more quickly I began to sink. It was as though he said to me, "The only way to be rescued this time is to roll over onto your back and let go. If you stop thrashing and flailing and open your arms, you will float on your back--and you will not drown." Friends, sometimes doing nothing to save ourselves takes more courage and strength than all the action in the world.
Slowly, the results of the testing trickled in: my labs were all normal. The CT and xray were normal. The one that would be most revealing, and most indicative of the thing I was fearing most, was the MRI. The results finally came through on our patient portal on a Sunday afternoon. We were driving home from church when I saw them come in. I couldn't open them then--not in the car, with the kids and everyone around. We hurried home, got the kids some lunch, and went upstairs. My hands shook so hard I could barely turn on my phone. While we'd had "close calls" health-wise in the past, we both agreed this time felt different. This time God wasn't just going to bring us to the brink of something and then spare us. This time we were going to walk through the waters. I opened the MRI results fully expecting to see the tell-tale signs of MS: lesions on my brain. I skimmed the document quickly, looking for the words. But they never came. The study concluded with the words, "Unremarkable imaging of the brain." It was normal.
In the immediate moment, I felt numb. I had been so bracing myself for this, that I didn't know how to feel. Eventually, I felt relief. Multiple sclerosis would have been so difficult. And yet, I had these symptoms, these problems--what should I make of them? The relief was one that was filled with tension. There was still something there. And we were no closer to discovering what it was. A fear I'd been stifling all along began to seep in, one that was honestly harder to grapple with than the fear of disability: what if this is nothing? What if my mind is so broken that all of these symptoms (the list grew daily), which feel incredibly real, are nothing more than my mind leading me astray? That single thought gave me feelings of outright panic, in all honesty, and kept me from sharing the journey with others for many weeks. I was terrified that there would never be a reason for this, that it would mean I couldn't trust my own mind.
Again, that image of the water came to mind. Regardless of the outcome, I knew I couldn't hold onto this fear. It was dragging me down. I had laid down my deepest fears in this journey, one after another, and told God I would accept whatever came from his hand, with his help. This fear of nothing was the last piece I was holding onto with white knuckles. "God, I'll face any diagnosis--only don't let it be nothing this time. I don't want to walk through illness, but I'm more afraid of what this would mean for my mind. I want to know I can trust my own thoughts, that my mind is not the problem here." Our God is a God who is interested in having all of us, and I wanted to be able to give all of myself without holding back. This fear, too, had to be laid down. It was the most terrifying moment of the journey, and took me the longest to reach, but I surrendered even that fear. "God, even if there's nothing here, I trust you. I can trust you." I let go and rolled over onto my back.
Since my initial visits with my doctor hadn't revealed any answers, I was sent on to a neurologist. Appointments with specialists of this kind are difficult to come by. The next open appointment here in town was in April, so I opted to see a doctor out of town. I had a month and three days to wait from the time I made my appointment to when I actually saw the doctor. I don't have to describe how agonizingly long those days felt. In the meantime, my symptoms continued to progress. I went from the occasional "bad day" with weakness in my legs, to having some kind of symptom every day. Sometimes I woke up with the weakness, sometimes it developed over the course of the day. But it was always there. I was so tired, always. I would stumble home from work desperate to lay my head down. I struggled to wake up in the mornings, and often fell asleep on the couch. There were myriad other symptoms that developed, and each one brought with it the cycle of fear, acceptance, and eventual peace. Each was hard-won.
The neurology appointment finally took place last Tuesday. Micah took the day off of work and went with me. I didn't know what to expect, but hoped for answers, for something. The doctor brought us into his office and the first words he said were, "Welcome to neurology. This is about how it always goes: you have all kinds of symptoms, and completely normal labs and tests. It's frustrating, isn't it?" He was one of the kindest doctors I've ever met, listening to us describe things, talking through the possibilities, and laying out his plan for further testing. His first step would be more lab work to narrow down the cause--there was no use in putting me through the discomfort of things like EMGs and lumbar punctures if there wasn't a need. I was more than happy with his plan. We left the appointment feeling tentative, but reassured.
By Thursday, the results of some of my lab work were in. Again, my hands shook as I opened the results on my phone. Vitamin B12 levels: normal. CPK: normal. In fact, it was all normal until I reached the last result. ANA: positive. I read it four times. Positive. Positive ANA most likely meant this was an autoimmune disease. It was something. God had graciously given me something to confirm that this was real, and not just my imagination. It's hard to understand, but I was unbelievably relieved.
That afternoon, the neurologist himself called me. He went through each lab result, then discussed the ANA. "I'm used to seeing results that are mildly positive, and could even be caused by infection. But yours is really high--you probably know that--which makes me think this is likely an autoimmune disease. I want to send you to a rheumatologist to figure out exactly what is causing this."
Now new words were thrown on the table, words like myasthenia gravis, and systemic lupus erythematosus. New words that signal new possibilities for diseases that will affect me daily--that may even affect the length of my life. It goes without saying that now, in another in-between space, we continue to grapple with the possibilities. But we also grapple with the realities: fatigue that is debilitating some days. Dizziness that leaves me nauseated. Headaches that make me want to crawl under the covers. And, most impactful, weakness that leaves me unable to stand or walk for much time at all. Last week I used my cane for the first time outside of our house. It was incredibly humbling. And yet, we're determined to meet this challenge with humor and lightness whenever possible. My cane is covered completely in red flowers--it will be as much a fashion statement as it will a mobility device.
So, the curtain is pulled back. The words I've struggled to find in these last months are now out in the open. We continue to walk this road--sometimes with a cane, or an arm tucked firmly into Micah's--and wait for our answers. As you see us, please don't hesitate to ask how things are. The hardest part for us has been introducing this topic, but we love to talk about the journey, the struggles, the joys, and the challenges. My hope is that our friends will not hesitate to talk to us about this. And if you see me with my incredibly fashionable cane, know that it's a day when I need a little more support for my sea legs. Now that the words are out there, we will be able to share the journey more openly moving forward. We will watch and see how the rest of this story unfolds...
