It’s hard to get through the Christmas season without hearing the word “miracle.” This word has special meaning to me, as I believe I have witnessed modern-day miracles. Real ones, not something dreamed up by marketing executives. (Finding a brand-new Lexus in your driveway with a ginormous red bow on top might be unexpected, but it is not a miracle. As you would naturally understand a few months later when the repo dudes come to take it back to La La Land. I digress...)
The miracles that are nearest and dearest to me involve my dear husband. Those of you who have poked around this here blog a bit know that I call my dear husband “Miracle Man.” For the one or two of you who don’t know me personally and are wondering why on earth I use that moniker for him here, now seems like a good time to tell you. Gather round, chid’rens, and hear the story of the time an ordinary man scored himself one humdinger of a miracle.
Picture it: Silver Spring, Maryland, 1972. A healthy baby boy enters the world, screaming his head off and waving his angry little fist in the air. He goes on to have a relatively normal childhood – except for the debilitating headaches. The doctors write the headaches off as migraines and tell his parents he will eventually outgrow them. As he gets older, the headaches give way to neck aches, which give way to back aches, which give way to the occasionally tingly extremity. Along the way, doctors write each symptom off as something unrelated to the others. "Nothing to worry about," they said. "Probably just stress," they said. "Take this pill, and here’s a referral for therapeutic massage." Which is doctor speak for, “Meh, you’ll be OK. I need to see other patients now.”
Then one sunshiny day in 1993, our young hero was rear-ended by an old guy going about 25 miles per hour. As one would imagine, this accident resulted in a considerable amount of pain in Miracle Man’s neck. “Whiplash,” the doctors said. “Take this pill and wear this brace; you’ll be OK in a few days.” But he wasn’t OK. The pain got worse. And it did not go away. Finally, the doctor who had once ordered massage to treat his chronic neck pain ordered an MRI. The MRI revealed the cause of the seemingly disjointed symptoms that Miracle Man had experienced since birth: Arnold-Chiari Malformation. Whew! Glad they solved that puzzle.
Ummm, Sassyfats? What the frick is Arnold Chaka Kahn Malformation?
Funny you should ask. First things first - repeat after me: kee-ARE-ee. (You already know how to pronounce Arnold.) Arnold-Chiari Malformation is a rare condition in which patients have a slight malformation in the cerebellum at the lower rear of the skull where the brain and spinal cord connect. This malformation causes part of the cerebellum and brain stem to protrude downward through the foramen magnum and create enough pressure on the spinal cord to interrupt the flow of cerebral spinal fluid (CSF), which can cause an array of symptoms - from headaches to full-body paralysis.
Translation: The bottom of your brain smooshes out through your lowermost skull hole, which can seriously eff you right up.
The good news in 1993 was that Miracle Man was young and otherwise healthy. He had a decompression surgery around the malformation that got his CSF flowing again. The headaches and neck aches stopped, he didn’t have any more tingling extremities, and everything seemed just peachy. He resumed his normal life after the recovery period and figured he was set to live happily ever after. Unfortunately, he ain’t no Cinderella, and this ain’t no fairy tale.
Fast forward to 2005. Miracle Man and I were married suburb dwellers living the TIOM lifestyle (two incomes, oppressive mortgage). We had a preschooler (Daughter1), a bun in the oven (Daughter2), and a rather large cat named Mickey (may he rest in peace). Around Thanksgiving, Miracle Man got this nagging, hacking cough. His voice got all hoarse and gravelly, and he felt like crap a good bit of the time. He went to his regular doctor, who treated him for a sinus infection. He took the antibiotics but didn’t get much better. So he went back to the doctor, got more antibiotics... and stayed sick. Here was a man who NEVER got sick, and he just could not shake this cold/sinus infection/bronchitis/whatever. The doctor kept prescribing different antibiotics, but nothing really helped. Then the doctor went the route of antifungals, but they didn’t really help either. Miracle Man got sick of going to the doctor, so he decided to call it “allergies” and get on with his life. After all, our already busy lives were about to get a lot busier by the pending arrival of Daughter2.
By the time Daughter2 finally arrived in March 2006, Miracle Man was in rough shape. He was still coughing a lot, he sounded like Harvey Fierstein when he talked, he was gaining weight like it was his job, and he was starting to have dizzy spells. He kept going to the doctor, who kept prescribing antibiotics and telling him to lose weight. As the loving and supportive wife I am, I got frustrated with his ongoing ailments. Here I was all bloated with child, and I was the one dragging myself to work every day, taking care of Daughter1, and picking up the slack around the house because he had the sniffles. It was still several months before we discovered that all his complaints were tied together in a neat little package that had nothing to do with his sinuses.
Fast forward a lil’ bit more to the summer of 2006. As I wallowed in a bout of postpartum depression that nearly killed me (I promise, I’ll write about it eventually), Miracle Man’s complaints had broadened to include debilitating back pain. The doctor blamed his recent weight gain and was reluctant to look further than that, but eventually conceded to order an MRI of the lumbar spine and send Miracle Man to a neurologist. Given Miracle Man’s medical history, they decided to also get an MRI of the upper spine as long as they had him in the tube. That’s when we discovered that Miracle Man’s Arnold-Chiari malformation had a little friend named syringomelia. Yay! Another puzzle solved!
Ummm, Sassyfats? What the frick is sirenginormelella?
Funny you should ask. First things first - repeat after me: suh-RING-o-MEE-lee-a. Arnold-Chiari is rare, but syringomelia is like its distant cousin from the third moon of Voltore. Outside of a neurologist’s office, even firmly established medical professionals give you a blank stare when you speak its name. Many neurologists can have long, successful careers and never even see a case of it. Syringomelia is characterized by syrinxes (let's just do it here: SEE-rinx-es), or cyst-like bubbles, in the spinal cord that can inhibit CSF flow and cause an array of symptoms - from dizziness to full-body paralysis (sound familiar?). Syrinxes come and go at will with little to no warning, which makes it hard for doctors to give you any real prognosis.
Translation: Syringomelia puts fluid-filled holes in the core of your spinal cord and can’t nobody tell you it's gonna be OK. And it can seriously eff you right up.
We are blessed to be situated relatively close to Johns Hopkins, where Miracle Man consulted with top neurological specialists – who have been on the Discovery Health Channel, y’all. That’s how you know they’re good. The downside to having access to all these specialists is that it takes FOR-EVAH to get an appointment with each one. Let me take this moment to say that if you have never had the pleasure of navigating the complex inner workings of the medical industry, I encourage you to drop to your knees and give fervent thanks and praise to the god of your understanding for sparing you that particular nightmare. Seriously!
After bouncing from specialist to specialist over several months, Miracle Man finally landed in the office of the man who was billed to us as the foremost expert on syringomelia in the world. I call him Dr. Smartypants. Dr. Smartypants was near the end of his surgical career when we met him. A very personable man, he was largely responsible for building the neurosciences department at Johns Hopkins into what it is today. After reviewing Miracle Man’s case, he decided not to take any action.
Do what now?
Let me explain something: by this time, Miracle Man had lost most of the feeling and strength in his arms and hands. His legs were weak. He passed out frequently (like several times a day). He had developed serious respiratory issues. He could no longer take care of himself, let alone go to work or help care for the children. He could not even hold our infant daughter without assistance. So when Dr. Smartypants said he would not operate, we reacted with surprise and disappointment. Dr. Smartypants then explained that the surgery to drain a syrinx involves making a small cut into the spinal cord. Miracle Man’s syrinx was right at the point in his cervical spine where Christopher Reeves severed his spinal cord, and we all know how that ended for him. "Too risky," Dr. Smartypants said. Miracle Man would have to adjust to his new way of life.
We went home from that appointment dejected. We had been hoping all along that one of these specialists would operate and restore Miracle Man to normal, just like the first surgeon had all those years ago. Our lives were completely upside down. Although the disorder resided in Miracle Man’s body, our entire family was sick. His parents took care of him during the day. My parents took care of our kids while I worked. Miracle Man was no longer working, and his short-term disability from work had run out. We had medical bills out the wazoo. It was only through the intervention of generous relatives that we did not end up on the street while our house, which we could no longer afford, languished on the weakened market.
At all times, I felt pulled equally in three directions: toward Miracle Man, toward the kids, and toward work. I had run out of leave at work, and could not afford to take unpaid leave. Since I was the sole breadwinner at that point, I felt the pressure of supporting my young and struggling family very heavily upon my shoulders. And yet I had a husband who needed full-time care, and two little kids who needed full-time care. No matter where I was at any given time, I felt like I was in the wrong place.
As time marched on, Miracle Man developed congestive heart failure. He was in and out of the hospital, where I learned that most doctors have not heard of Arnold-Chiari or syringomelia. Since Miracle Man seemed to be on the fast track to the afterlife, Dr. Smartypants decided it was finally time to operate. In my estimation, it was about damn time.
In October 2007, the day before our 10th anniversary, Miracle Man went under the knife. While poking around inside Miracle Man's neck, Dr. Smartypants discovered that there was a significant amount of scar tissue around Miracle Man's brain stem. Let that sink in for a minute. Yes, I said brain stem.
The brain stem is the part of your body that controls all of your basic life-sustaining functions, like breathing and having a heartbeat. Miracle Man's brain stem was being choked out by scar tissue. So Dr. Smartypants cleaned up the brain stem, saw that the CSF was flowing again, and opted not to drain the Syrinx of Doom at that time. It was too risky, and no longer seemed necessary.
I wish I could tell you that everything went hunky dory, and say that this is the happy ending. But oh, my dear friends, this was only the beginning. Thanks to some complications, Miracle Man had two subsequent emergency surgeries around the brain stem over the next 12 days. Having had his brain and spine exposed to the open air that much, he developed spinal meningitis. Having been in the hospital awhile, he developed intestinal MRSA. And since two life-threatening infections didn't seem like enough, he went ahead and developed a third: septicemia.
Miracle Man spent the next three months at Hopkins fighting for his life. He would turn a corner and seem like he was getting better, then BOOM! Code Blue. I distinctly remember one night when the nurse and I stood in his room watching the pulse-ox numbers dip below the threshold for staying off a respirator and shouting to the barely conscious Miracle Man, "Breathe, Mike! Goooood joooooob!" He was put into a couple of medically induced comas, and his chances for survival looked grim at best.
This time in Miracle Man's recovery was almost like a little dance: Oh look, he's doing better! Yay! Uh-oh, he crashed again! Shit! No, wait, he's better again! Yay! Annd, he's down again. Shit! He was in and out of the Neurological Critial Care Unit on a weekly basis. When he got a little bit stronger, he was back and forth between Hopkins and the rehab facility. He got to come home a couple of times, only to be rushed back to the hospital within hours. One step forward, two steps back. Spin your partner, do-si-do.
I wish that I could find it within myself to adequately describe the hell we all lived through during this time. In all honesty, it's hard to let myself get too close to the memories. Hurts too much. Suffice it to say I was flying by the seat of my pants, keeping my head bent against the wind, just trying to keep moving so that I wouldn't curl into the fetal position and let the world fade away. My kids needed at least one functioning parent, and it looked like I was it.
Throughout this horrific time, I learned that when life brings you to your knees, God will prop you up and power you through the motions as long as you let Him. We had a vast network of prayer warriors who called out to God on our behalf, and I learned to just let Him take the reigns and hope for the best. If not for my faith during those months, I doubt I would have survived.
Not long after the holidays, at this very time of year, Miracle Man came home to stay. He brought with him a walker and an IV pole, and a schedule full of visits to various specialists: neurologist, infectious disease specialists, physical therapists, etc. In the beginning, he was so weak he could barely walk across the room. Little by little, he kept taking steps. Eventually he could make it to the front door without his walker. Then the mailbox. Then the house next door. When he was cleared to drive again, he started going to the gym and walking on the treadmill for 5 minutes at a time. He kept at it, and he kept getting stronger.
Nowadays, Miracle Man is a stay-at-home Dad who is blissfully free from the symptoms that plagued him before his surgery, right down to the gravelly voice. He appears strong and healthy. However, the Syrinx of Doom lingers in the full length of Miracle Man's cervical spine. And now it has a friend that stretches from the middle of Miracle Man's thoracic spine all the way to the bottom of his lumbar spine. One neurologist looked at a recent MRI, gave Miracle Man a puzzled look, and said, "I honestly don't understand how you are not a quadriplegic." So although he is symptom free at the moment, we don't know how long the reprieve will last.
In the spirit of embracing the miracle of his survival and recovery and not living in a constant state of dread, I am grateful that Miracle Man is healthy today. And I pray that he will be healthy tomorrow. And for lots of tomorrows after that.
The miracles that are nearest and dearest to me involve my dear husband. Those of you who have poked around this here blog a bit know that I call my dear husband “Miracle Man.” For the one or two of you who don’t know me personally and are wondering why on earth I use that moniker for him here, now seems like a good time to tell you. Gather round, chid’rens, and hear the story of the time an ordinary man scored himself one humdinger of a miracle.
Picture it: Silver Spring, Maryland, 1972. A healthy baby boy enters the world, screaming his head off and waving his angry little fist in the air. He goes on to have a relatively normal childhood – except for the debilitating headaches. The doctors write the headaches off as migraines and tell his parents he will eventually outgrow them. As he gets older, the headaches give way to neck aches, which give way to back aches, which give way to the occasionally tingly extremity. Along the way, doctors write each symptom off as something unrelated to the others. "Nothing to worry about," they said. "Probably just stress," they said. "Take this pill, and here’s a referral for therapeutic massage." Which is doctor speak for, “Meh, you’ll be OK. I need to see other patients now.”
Then one sunshiny day in 1993, our young hero was rear-ended by an old guy going about 25 miles per hour. As one would imagine, this accident resulted in a considerable amount of pain in Miracle Man’s neck. “Whiplash,” the doctors said. “Take this pill and wear this brace; you’ll be OK in a few days.” But he wasn’t OK. The pain got worse. And it did not go away. Finally, the doctor who had once ordered massage to treat his chronic neck pain ordered an MRI. The MRI revealed the cause of the seemingly disjointed symptoms that Miracle Man had experienced since birth: Arnold-Chiari Malformation. Whew! Glad they solved that puzzle.
Ummm, Sassyfats? What the frick is Arnold Chaka Kahn Malformation?
Funny you should ask. First things first - repeat after me: kee-ARE-ee. (You already know how to pronounce Arnold.) Arnold-Chiari Malformation is a rare condition in which patients have a slight malformation in the cerebellum at the lower rear of the skull where the brain and spinal cord connect. This malformation causes part of the cerebellum and brain stem to protrude downward through the foramen magnum and create enough pressure on the spinal cord to interrupt the flow of cerebral spinal fluid (CSF), which can cause an array of symptoms - from headaches to full-body paralysis.
Translation: The bottom of your brain smooshes out through your lowermost skull hole, which can seriously eff you right up.
The good news in 1993 was that Miracle Man was young and otherwise healthy. He had a decompression surgery around the malformation that got his CSF flowing again. The headaches and neck aches stopped, he didn’t have any more tingling extremities, and everything seemed just peachy. He resumed his normal life after the recovery period and figured he was set to live happily ever after. Unfortunately, he ain’t no Cinderella, and this ain’t no fairy tale.
Fast forward to 2005. Miracle Man and I were married suburb dwellers living the TIOM lifestyle (two incomes, oppressive mortgage). We had a preschooler (Daughter1), a bun in the oven (Daughter2), and a rather large cat named Mickey (may he rest in peace). Around Thanksgiving, Miracle Man got this nagging, hacking cough. His voice got all hoarse and gravelly, and he felt like crap a good bit of the time. He went to his regular doctor, who treated him for a sinus infection. He took the antibiotics but didn’t get much better. So he went back to the doctor, got more antibiotics... and stayed sick. Here was a man who NEVER got sick, and he just could not shake this cold/sinus infection/bronchitis/whatever. The doctor kept prescribing different antibiotics, but nothing really helped. Then the doctor went the route of antifungals, but they didn’t really help either. Miracle Man got sick of going to the doctor, so he decided to call it “allergies” and get on with his life. After all, our already busy lives were about to get a lot busier by the pending arrival of Daughter2.
By the time Daughter2 finally arrived in March 2006, Miracle Man was in rough shape. He was still coughing a lot, he sounded like Harvey Fierstein when he talked, he was gaining weight like it was his job, and he was starting to have dizzy spells. He kept going to the doctor, who kept prescribing antibiotics and telling him to lose weight. As the loving and supportive wife I am, I got frustrated with his ongoing ailments. Here I was all bloated with child, and I was the one dragging myself to work every day, taking care of Daughter1, and picking up the slack around the house because he had the sniffles. It was still several months before we discovered that all his complaints were tied together in a neat little package that had nothing to do with his sinuses.
Fast forward a lil’ bit more to the summer of 2006. As I wallowed in a bout of postpartum depression that nearly killed me (I promise, I’ll write about it eventually), Miracle Man’s complaints had broadened to include debilitating back pain. The doctor blamed his recent weight gain and was reluctant to look further than that, but eventually conceded to order an MRI of the lumbar spine and send Miracle Man to a neurologist. Given Miracle Man’s medical history, they decided to also get an MRI of the upper spine as long as they had him in the tube. That’s when we discovered that Miracle Man’s Arnold-Chiari malformation had a little friend named syringomelia. Yay! Another puzzle solved!
Ummm, Sassyfats? What the frick is sirenginormelella?
Funny you should ask. First things first - repeat after me: suh-RING-o-MEE-lee-a. Arnold-Chiari is rare, but syringomelia is like its distant cousin from the third moon of Voltore. Outside of a neurologist’s office, even firmly established medical professionals give you a blank stare when you speak its name. Many neurologists can have long, successful careers and never even see a case of it. Syringomelia is characterized by syrinxes (let's just do it here: SEE-rinx-es), or cyst-like bubbles, in the spinal cord that can inhibit CSF flow and cause an array of symptoms - from dizziness to full-body paralysis (sound familiar?). Syrinxes come and go at will with little to no warning, which makes it hard for doctors to give you any real prognosis.
Translation: Syringomelia puts fluid-filled holes in the core of your spinal cord and can’t nobody tell you it's gonna be OK. And it can seriously eff you right up.
We are blessed to be situated relatively close to Johns Hopkins, where Miracle Man consulted with top neurological specialists – who have been on the Discovery Health Channel, y’all. That’s how you know they’re good. The downside to having access to all these specialists is that it takes FOR-EVAH to get an appointment with each one. Let me take this moment to say that if you have never had the pleasure of navigating the complex inner workings of the medical industry, I encourage you to drop to your knees and give fervent thanks and praise to the god of your understanding for sparing you that particular nightmare. Seriously!
After bouncing from specialist to specialist over several months, Miracle Man finally landed in the office of the man who was billed to us as the foremost expert on syringomelia in the world. I call him Dr. Smartypants. Dr. Smartypants was near the end of his surgical career when we met him. A very personable man, he was largely responsible for building the neurosciences department at Johns Hopkins into what it is today. After reviewing Miracle Man’s case, he decided not to take any action.
Do what now?
Let me explain something: by this time, Miracle Man had lost most of the feeling and strength in his arms and hands. His legs were weak. He passed out frequently (like several times a day). He had developed serious respiratory issues. He could no longer take care of himself, let alone go to work or help care for the children. He could not even hold our infant daughter without assistance. So when Dr. Smartypants said he would not operate, we reacted with surprise and disappointment. Dr. Smartypants then explained that the surgery to drain a syrinx involves making a small cut into the spinal cord. Miracle Man’s syrinx was right at the point in his cervical spine where Christopher Reeves severed his spinal cord, and we all know how that ended for him. "Too risky," Dr. Smartypants said. Miracle Man would have to adjust to his new way of life.
We went home from that appointment dejected. We had been hoping all along that one of these specialists would operate and restore Miracle Man to normal, just like the first surgeon had all those years ago. Our lives were completely upside down. Although the disorder resided in Miracle Man’s body, our entire family was sick. His parents took care of him during the day. My parents took care of our kids while I worked. Miracle Man was no longer working, and his short-term disability from work had run out. We had medical bills out the wazoo. It was only through the intervention of generous relatives that we did not end up on the street while our house, which we could no longer afford, languished on the weakened market.
At all times, I felt pulled equally in three directions: toward Miracle Man, toward the kids, and toward work. I had run out of leave at work, and could not afford to take unpaid leave. Since I was the sole breadwinner at that point, I felt the pressure of supporting my young and struggling family very heavily upon my shoulders. And yet I had a husband who needed full-time care, and two little kids who needed full-time care. No matter where I was at any given time, I felt like I was in the wrong place.
As time marched on, Miracle Man developed congestive heart failure. He was in and out of the hospital, where I learned that most doctors have not heard of Arnold-Chiari or syringomelia. Since Miracle Man seemed to be on the fast track to the afterlife, Dr. Smartypants decided it was finally time to operate. In my estimation, it was about damn time.
In October 2007, the day before our 10th anniversary, Miracle Man went under the knife. While poking around inside Miracle Man's neck, Dr. Smartypants discovered that there was a significant amount of scar tissue around Miracle Man's brain stem. Let that sink in for a minute. Yes, I said brain stem.
The brain stem is the part of your body that controls all of your basic life-sustaining functions, like breathing and having a heartbeat. Miracle Man's brain stem was being choked out by scar tissue. So Dr. Smartypants cleaned up the brain stem, saw that the CSF was flowing again, and opted not to drain the Syrinx of Doom at that time. It was too risky, and no longer seemed necessary.
I wish I could tell you that everything went hunky dory, and say that this is the happy ending. But oh, my dear friends, this was only the beginning. Thanks to some complications, Miracle Man had two subsequent emergency surgeries around the brain stem over the next 12 days. Having had his brain and spine exposed to the open air that much, he developed spinal meningitis. Having been in the hospital awhile, he developed intestinal MRSA. And since two life-threatening infections didn't seem like enough, he went ahead and developed a third: septicemia.
Miracle Man spent the next three months at Hopkins fighting for his life. He would turn a corner and seem like he was getting better, then BOOM! Code Blue. I distinctly remember one night when the nurse and I stood in his room watching the pulse-ox numbers dip below the threshold for staying off a respirator and shouting to the barely conscious Miracle Man, "Breathe, Mike! Goooood joooooob!" He was put into a couple of medically induced comas, and his chances for survival looked grim at best.
This time in Miracle Man's recovery was almost like a little dance: Oh look, he's doing better! Yay! Uh-oh, he crashed again! Shit! No, wait, he's better again! Yay! Annd, he's down again. Shit! He was in and out of the Neurological Critial Care Unit on a weekly basis. When he got a little bit stronger, he was back and forth between Hopkins and the rehab facility. He got to come home a couple of times, only to be rushed back to the hospital within hours. One step forward, two steps back. Spin your partner, do-si-do.
I wish that I could find it within myself to adequately describe the hell we all lived through during this time. In all honesty, it's hard to let myself get too close to the memories. Hurts too much. Suffice it to say I was flying by the seat of my pants, keeping my head bent against the wind, just trying to keep moving so that I wouldn't curl into the fetal position and let the world fade away. My kids needed at least one functioning parent, and it looked like I was it.
Throughout this horrific time, I learned that when life brings you to your knees, God will prop you up and power you through the motions as long as you let Him. We had a vast network of prayer warriors who called out to God on our behalf, and I learned to just let Him take the reigns and hope for the best. If not for my faith during those months, I doubt I would have survived.
Not long after the holidays, at this very time of year, Miracle Man came home to stay. He brought with him a walker and an IV pole, and a schedule full of visits to various specialists: neurologist, infectious disease specialists, physical therapists, etc. In the beginning, he was so weak he could barely walk across the room. Little by little, he kept taking steps. Eventually he could make it to the front door without his walker. Then the mailbox. Then the house next door. When he was cleared to drive again, he started going to the gym and walking on the treadmill for 5 minutes at a time. He kept at it, and he kept getting stronger.
Nowadays, Miracle Man is a stay-at-home Dad who is blissfully free from the symptoms that plagued him before his surgery, right down to the gravelly voice. He appears strong and healthy. However, the Syrinx of Doom lingers in the full length of Miracle Man's cervical spine. And now it has a friend that stretches from the middle of Miracle Man's thoracic spine all the way to the bottom of his lumbar spine. One neurologist looked at a recent MRI, gave Miracle Man a puzzled look, and said, "I honestly don't understand how you are not a quadriplegic." So although he is symptom free at the moment, we don't know how long the reprieve will last.
In the spirit of embracing the miracle of his survival and recovery and not living in a constant state of dread, I am grateful that Miracle Man is healthy today. And I pray that he will be healthy tomorrow. And for lots of tomorrows after that.
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| Miracle Man - Present Day |
