In July 2009 while in my first trimester of pregnancy, I started having unexplained seizures. This is part 4 of the series that recounts that time. Read the previous entries here:
Intro
Part 1
Part 2
Part 3
And I will stroll the merry way and jump the hedges first
And I will drink the cool clean water for to quench my thirst
I started the last entry noting how difficult it was to write due to memory loss. That issue also applies to this entry, perhaps even more so.
After I awoke from the first overnight in the hospital to the news that I had experienced two more seizures in my sleep, I was completely shocked. I sat up in bed and stared into space, deep in thought. The TV may have been on, and I think I feigned interest for a while. But I had so many questions running around in my head.
What if they can’t figure it out? What if this keeps happening? What are these seizures doing to the baby?
And most importantly, what do I look like when I’m having one?
Such a superficial and silly concern, right? But damn if I don’t still wonder about that. Truthfully, I don’t want to know. If it was ever captured on video, I’d destroy it without a second thought. I’m 100% positive that it’s horrible and frightening and disgusting. But there’s a sick side of me that’s a little curious…
Every once in a while that morning I’d look over at Tony and ask, “Did it really happen again? You’re not just effing with me?” I’m sure it wasn’t annoying and tedious at all for him to answer those questions over and over.
Okay. So what the hell now?
My neurologist, Dr. K, decided it was best to give me a mild sedative for now. This is not usually recommended for pregnant women. But the goal was to calm the brain activity in order to stop the seizures any way they could. At the same time she put me on an anti-seizure medication called Keppra. It’s a fairly new drug and the effects of taking it while pregnant are not well known. The few cases that are documented show that there should be no ill effect on the little one. At this point, the potential damage from another seizure was a higher risk to me and the baby than either of these drugs.
Dr. K was positive and confident that this was the way to go. But all I heard was:
“You’re unborn child will probably be fine while you take this.”
“Not much data with pregnant women.”
“We don’t really know.”
:shrug:
What were we supposed to say? ‘Oh heck no, I’m not exposing my kid to that POISON, I’ll just sit here and let my brain wig out some more.’ Or maybe, ‘Okay, that sounds totally awesome, let’s do this! I’m so pumped!’
We just had to go with it and see what happened.
For the next few days I was continuously monitored. They had a “sitter” in to watch me while I slept, which also allowed Tony to get some rest (although I’m sure he got very little). They ran more tests and repeated tests that were already run. They glued electrodes all over my scalp to record brain activity (EEG), and I wondered aloud if they could see all the useless celebrity gossip I have going on up there. The glue from the EEG stunk like paint primer, and I was rocking the futuristic Medusa look for a while.
I was really out of it. People came to visit, like Jenny and Danielle. They brought me books (which I still need to return, what an awesome friend I am). I don’t remember the two of them sitting down, if I was still rocking the stinky hair plugs, or if we had any conversation at all. But I remember seeing their beautiful faces as they stood at the foot of my bed, and feeling happy and grateful they were there.
One whole day passed without a seizure. Then another.
I remember the headache. I had one for days. I could barely open my eyes, it ached so badly. I thought maybe my brain had been fried. Turns out that when they drain spinal fluid during a lumbar puncture, sometimes the wound doesn’t heal properly and you get what is called a spinal headache. Just a note to you all: Don’t ever get one of those. My skull felt like it was too small and it was squeezing my brain like a vice. The treatment was to lay flat on my back for a while, not a difficult thing to do. And caffeine could help too, something I had been avoiding due to my delicate condition. My sister got me a medium iced coffee from Dunkin Donuts, and by god that was the most delicious beverage I have ever had in my life. I don’t remember much, but I will always remember that iced coffee.
The headache went away finally and I felt like a new person.
Another seizure-free day passed. The results of the EEG came back. They saw some minor activity in one area of my brain. So they would do an MRI, focusing on that area. Depending on those results, I could possibly go home soon. The fact that I hadn’t had a seizure since the first night was a good sign that the medicine was working.
The results of the MRI were good. The activity was there, but it was minor and nothing to be super concerned about at this point. On day 6 of my hospital stay, I could finally go home. It was a long, exhausting week. I was glad to go home, but I was also nervous. I’m sure Tony was even more scared. There were still no real answers as to why I had the seizures or if I would continue to have them. So for now I would go home to rest, where my husband and family would monitor and take care of me. And we would go back to the hospital next week to follow up with the doctors. All I could hope for was an answer and a solution. But the journey and the search for those things would be much longer than I expected.
To be continued…
Showing posts with label coming through. Show all posts
Showing posts with label coming through. Show all posts
Wednesday, December 1, 2010
Tuesday, November 9, 2010
Coming Through, Part 3
In July 2009 while in my first trimester of pregnancy, I started having unexplained seizures. This is part 3 of the series that recounts that time. Read the previous entries here:
Intro
Part 1
Part 2
We shall walk and talk in gardens all misty wet with rain
And I will never never never grow so old again
It’s been difficult writing this part of the series, covering the hospital stay and weeks to follow. Like I’ve said before, I remember very little. And the pieces I do remember don’t follow any logical time sequence. Through my few memories and Tony’s written account, I’ve tried to make some sense of it.
Despite my hazy memory, I very clearly recall the ambulance ride from our local hospital to Beth Israel in Boston. I wanted Tony to ride with me, but he needed to drive so that he would have a vehicle in the city. I asked the doctors if I could go with him in the car, but I still needed to be monitored closely. So it was just me and the nice 12-year-old boy pretending to be an EMT in the back of the ambulance. He was sweet. Not much of a talker, which was fine with me. I felt old, pregnant, and quite content to just lie there quietly with my hands folded over my tummy.
This ride was much different than the one from earlier that night. It was calm, smooth, and unhurried, although we made it into town quickly. It was a Saturday morning and the highway was empty. The sun was just rising on a clear day. I couldn’t see much outside the windows, being horizontal like I was. But I could see the way the sun sparkled off the tops of buildings of the Boston skyline. Orange, gold, silver, iridescent and shimmery. It was beautiful and so peaceful.
That drive was like being in the eye of the storm. Coming out of hours of total chaos and heading into much of the same. A brief respite at dawn. I breathed it in like fresh air. I wished it were a little longer so I could enjoy the quiet.
I was taken to the emergency room at BI, back into the storm. Nobody was sure where I was going to land. Obstetrics? Neurology? The big debate of the day. Tony was already there waiting for me as I was rolled into a ‘room’ in the ER, which consisted of a corner with a curtain around it. These busy big city hospitals are short on space, I guess. Doctors came in and out, asking loads of questions. I deferred to my husband much of the time, something I would become very used to doing.
I was happy to see my mom arrive. She carried her purse and a plastic shopping bag full of the essentials, tissues and mints and magazines. Always prepared, my mum. My sisters arrived soon after. I was glad to have familiar faces around. But they all looked tired and worried and I just wanted people to stop. Guys, it’s okay. I’m fiiiine. I truly felt that there was no reason to worry. It was a fluke. A crazy weird fluke. I ate something bad, is all. This business, all this fuss is just silly!
Of course, I didn't see myself on the floor the night before. The convulsing and the blood. Fighting with the EMTs as they tried to help. Perhaps 'silly' isn't the word my husband would use to describe the situation.
None of the doctors or nurses could tell us exactly what had happened or why. But they had a plan. They would perform every test they could think of. And so it started. Blood tests, motor, memory, and reflex tests, lumbar puncture (yeah, it was about as pleasant as it sounds), MRIs, EKGs, EEGs… The works. The only thing they weren’t able to do was a cat scan, which is not baby safe. I’m cooking this baby just fine on my own, thankyouverymuch.
When I was in one of the more time consuming tests, Tony was able to step out with his mom, dad, and sister for a bite to eat. I imagine he needed (and deserved) a break. I learned recently that this was the time his wall broke down. Always the picture of strength and support for me, he could finally let go of all his worries and fears. Spill it out on a cafeteria table with his family there to hold him up. They listened and hugged him as he let it all out.
“It’s going to be okay,” they assured. He didn’t know if it was true. But he felt better.
At some point in between one test or another, I was finally moved into a room in the neurology unit. Since the baby was fine (can I get a hallelujah?), they would focus on this noggin of mine, :knock knock:. I was relieved to be in a real room. I hated the feeling of being in limbo. Either put me somewhere or send me home, ya know?
I was settled in the room after a long, crazy day. The rest of the family had left and Tony stayed by my side. I was exhausted. My whole body was sore from the fall, and my mind needed the escape of some cheesy sitcom. We lay curled up together in my hospital bed watching TV. Tony is always warm and he made it feel like we were home in that stiff, starch white bed. It didn’t take long for me to drift off in his arms.
He told me later on that he was scared to go to sleep that night. Any movement I made in my sleep would cause him to tense up with anxiety, reliving the night before.
At midnight Tony was awoken by another one of my movements. But this time I was not just shifting my weight in my sleep. I was convulsing. He thought he was having a nightmare at first. When he realized what was happening, he hit the call button and yelled that I was having a seizure. A nurse came in and the two of them turned me onto my side. All they could do was wait it out. It lasted about a minute, just like the last time.
I remember nothing of that incident or the rest of the night to come. I’ve been told I was in a fog for a while, came out of it for a few minutes, and then went back to sleep.
Tony barely slept. He sat in the chair next to my bed and watched my every breath, dozing off here and there.
That morning at around 6am, the nightmare continued. Another seizure. Tony jumped to his feet and ran to the door to find help, almost knocking down my neurologist, Dr. K, who was on her way in. The two of them again moved me to my side and waited for it to be over. Dr. K saw most of my third seizure, as well as the emotional reaction of my husband to all the stress. Tony is a very reasonable, together person. But this was too much. He had watched his pregnant wife have three violent, unexplained seizures in a 26-hour period and nobody could tell him why or how to fix it. Dr. K helped calm him down and assured him that they were going to take care of me. She told him how strong he was being for me and for our baby.
I go back and forth all the time on whether I believe in God or a higher power. But I believe something sent Dr. K to my room at the exact right moment. She was there to witness my seizure first-hand, enabling her to better treat my condition. And she was able to be there for my husband in a way that only an outsider, someone emotionally removed from the situation can be. I dunno… Maybe it was just a coincidence that she was walking into my room at that precise moment. But either way… It seems like someone up there is looking out for us.
I remember waking up that morning to a gray day outside the window, Tony sitting in the chair next to my bed. I stretched and reached for his hand.
“Morning babe,” I said.
“Hey. How do you feel?”
“Fine. Tired. Sore.”
“Do you know what happened?”
“… Oh god… no.”
I was afraid to hear him say the words. I knew by looking at his face, but I didn’t want to hear it. Again? Seriously? No, no, no. I was angry. Pissed off at my body, at my brain, at the world. What the hell is going on?
When I found out that there were two more seizures that night, my anger turned to legitimate concern. All along I had been worried about the baby and my husband and putting everyone out with all this nonsense. But it finally hit me. Something might really be wrong.
I know, I know… One random massive seizure wasn’t enough to make me concerned for myself. It took three. Everyone has their limit, I guess.
Now both Tony and I were praying and pleading for someone to just make the damn seizures stop. We could only hope that Dr. K had the answers.
Continued in Part 4...
Intro
Part 1
Part 2
We shall walk and talk in gardens all misty wet with rain
And I will never never never grow so old again
It’s been difficult writing this part of the series, covering the hospital stay and weeks to follow. Like I’ve said before, I remember very little. And the pieces I do remember don’t follow any logical time sequence. Through my few memories and Tony’s written account, I’ve tried to make some sense of it.
Despite my hazy memory, I very clearly recall the ambulance ride from our local hospital to Beth Israel in Boston. I wanted Tony to ride with me, but he needed to drive so that he would have a vehicle in the city. I asked the doctors if I could go with him in the car, but I still needed to be monitored closely. So it was just me and the nice 12-year-old boy pretending to be an EMT in the back of the ambulance. He was sweet. Not much of a talker, which was fine with me. I felt old, pregnant, and quite content to just lie there quietly with my hands folded over my tummy.
This ride was much different than the one from earlier that night. It was calm, smooth, and unhurried, although we made it into town quickly. It was a Saturday morning and the highway was empty. The sun was just rising on a clear day. I couldn’t see much outside the windows, being horizontal like I was. But I could see the way the sun sparkled off the tops of buildings of the Boston skyline. Orange, gold, silver, iridescent and shimmery. It was beautiful and so peaceful.
That drive was like being in the eye of the storm. Coming out of hours of total chaos and heading into much of the same. A brief respite at dawn. I breathed it in like fresh air. I wished it were a little longer so I could enjoy the quiet.
I was taken to the emergency room at BI, back into the storm. Nobody was sure where I was going to land. Obstetrics? Neurology? The big debate of the day. Tony was already there waiting for me as I was rolled into a ‘room’ in the ER, which consisted of a corner with a curtain around it. These busy big city hospitals are short on space, I guess. Doctors came in and out, asking loads of questions. I deferred to my husband much of the time, something I would become very used to doing.
I was happy to see my mom arrive. She carried her purse and a plastic shopping bag full of the essentials, tissues and mints and magazines. Always prepared, my mum. My sisters arrived soon after. I was glad to have familiar faces around. But they all looked tired and worried and I just wanted people to stop. Guys, it’s okay. I’m fiiiine. I truly felt that there was no reason to worry. It was a fluke. A crazy weird fluke. I ate something bad, is all. This business, all this fuss is just silly!
Of course, I didn't see myself on the floor the night before. The convulsing and the blood. Fighting with the EMTs as they tried to help. Perhaps 'silly' isn't the word my husband would use to describe the situation.
None of the doctors or nurses could tell us exactly what had happened or why. But they had a plan. They would perform every test they could think of. And so it started. Blood tests, motor, memory, and reflex tests, lumbar puncture (yeah, it was about as pleasant as it sounds), MRIs, EKGs, EEGs… The works. The only thing they weren’t able to do was a cat scan, which is not baby safe. I’m cooking this baby just fine on my own, thankyouverymuch.
When I was in one of the more time consuming tests, Tony was able to step out with his mom, dad, and sister for a bite to eat. I imagine he needed (and deserved) a break. I learned recently that this was the time his wall broke down. Always the picture of strength and support for me, he could finally let go of all his worries and fears. Spill it out on a cafeteria table with his family there to hold him up. They listened and hugged him as he let it all out.
“It’s going to be okay,” they assured. He didn’t know if it was true. But he felt better.
At some point in between one test or another, I was finally moved into a room in the neurology unit. Since the baby was fine (can I get a hallelujah?), they would focus on this noggin of mine, :knock knock:. I was relieved to be in a real room. I hated the feeling of being in limbo. Either put me somewhere or send me home, ya know?
I was settled in the room after a long, crazy day. The rest of the family had left and Tony stayed by my side. I was exhausted. My whole body was sore from the fall, and my mind needed the escape of some cheesy sitcom. We lay curled up together in my hospital bed watching TV. Tony is always warm and he made it feel like we were home in that stiff, starch white bed. It didn’t take long for me to drift off in his arms.
He told me later on that he was scared to go to sleep that night. Any movement I made in my sleep would cause him to tense up with anxiety, reliving the night before.
At midnight Tony was awoken by another one of my movements. But this time I was not just shifting my weight in my sleep. I was convulsing. He thought he was having a nightmare at first. When he realized what was happening, he hit the call button and yelled that I was having a seizure. A nurse came in and the two of them turned me onto my side. All they could do was wait it out. It lasted about a minute, just like the last time.
I remember nothing of that incident or the rest of the night to come. I’ve been told I was in a fog for a while, came out of it for a few minutes, and then went back to sleep.
Tony barely slept. He sat in the chair next to my bed and watched my every breath, dozing off here and there.
That morning at around 6am, the nightmare continued. Another seizure. Tony jumped to his feet and ran to the door to find help, almost knocking down my neurologist, Dr. K, who was on her way in. The two of them again moved me to my side and waited for it to be over. Dr. K saw most of my third seizure, as well as the emotional reaction of my husband to all the stress. Tony is a very reasonable, together person. But this was too much. He had watched his pregnant wife have three violent, unexplained seizures in a 26-hour period and nobody could tell him why or how to fix it. Dr. K helped calm him down and assured him that they were going to take care of me. She told him how strong he was being for me and for our baby.
I go back and forth all the time on whether I believe in God or a higher power. But I believe something sent Dr. K to my room at the exact right moment. She was there to witness my seizure first-hand, enabling her to better treat my condition. And she was able to be there for my husband in a way that only an outsider, someone emotionally removed from the situation can be. I dunno… Maybe it was just a coincidence that she was walking into my room at that precise moment. But either way… It seems like someone up there is looking out for us.
I remember waking up that morning to a gray day outside the window, Tony sitting in the chair next to my bed. I stretched and reached for his hand.
“Morning babe,” I said.
“Hey. How do you feel?”
“Fine. Tired. Sore.”
“Do you know what happened?”
“… Oh god… no.”
I was afraid to hear him say the words. I knew by looking at his face, but I didn’t want to hear it. Again? Seriously? No, no, no. I was angry. Pissed off at my body, at my brain, at the world. What the hell is going on?
When I found out that there were two more seizures that night, my anger turned to legitimate concern. All along I had been worried about the baby and my husband and putting everyone out with all this nonsense. But it finally hit me. Something might really be wrong.
I know, I know… One random massive seizure wasn’t enough to make me concerned for myself. It took three. Everyone has their limit, I guess.
Now both Tony and I were praying and pleading for someone to just make the damn seizures stop. We could only hope that Dr. K had the answers.
Continued in Part 4...
Monday, November 1, 2010
Coming Through, Part 2
In July 2009 while in my first trimester of pregnancy, I started having unexplained seizures. This is part 2 of the series that recounts that time. Read the previous entries here:
Intro
Part 1
And I will raise my hand up into the nighttime sky
And count the stars there shining in your eyes
Just to dig it all and not to wonder, that’s fine
And I’ll be satisfied not to read in between the lines
Intro
Part 1
And I will raise my hand up into the nighttime sky
And count the stars there shining in your eyes
Just to dig it all and not to wonder, that’s fine
And I’ll be satisfied not to read in between the lines
July 2009:
The lawn. That’s the first thing I saw in front of me. It was dark out and I was floating above the grass, unrecognizable faces above me on either side. They asked if I knew what had happened.
No.
Had they asked if I knew my name, I would have answered the same. I was someone else. I was nobody. I was just born, or maybe I died. Nothing was sure. Yet oddly enough, everything was fine. I was warm, calm, and fine. Confused, yes, but without any strength or desire to put the pieces together.
Sometimes I still think about that feeling, of not knowing who I was. It was absolutely surreal. No past, present, or future. No name, no ties. Floating in a dream.
Then I saw a familiar face. He was frantic, yet the sight of him was reassuring. He knows me. This guy over here! He’ll tell you who I am!
His eyes met mine and he said to me without words, “There you are.” Gently, I was pulled back down to earth and I started to feel the weight of my limbs again. My best friend, my husband, my heart, Tony… yes, that’s whose face that is… he called my name. It sounded vaguely familiar, but the tone was wrong. Worried. Each time I heard my name aloud, I was pulled down into the world a little more.
Sarah, you’re going to be okay.
Sarah, we’re taking you to the hospital.
Sarah, you had a fall.
I am Sarah. And apparently I fell. Musta been a bad one.
Our neighbors stood outside their homes. They looked worried too, their hands over their mouths. Before I could smile and wave (would that be silly?), the gurney under me was lifted up into the back of the ambulance. Tony was standing outside the open doors at my feet.
“I’ll meet you at the hospital. They’re going to take care of you and make sure you and the baby are okay.”
Baby?
I didn’t ask what he meant. I nodded, rested my head back, and closed my eyes. At some point during the ambulance ride I remembered that I was pregnant. 3 months, I think. Ohh. The baby. I looked down at my nightgown and placed a hand over my belly. A tiny little pooch about the size of my palm protruded slightly. My ears got hot. Then my face. ‘Oh my god, the baby. How bad was the fall. What if…’
…
Tony’s experience of that night is obviously very different. He wrote about it in detail. But it is too terrifying to post. I will summarize.
Late in the night, he awoke to the sound of coughing or choking and thought it was the dog. Barkley often hacked in his old age, god bless him. I was moving around. Tony assumed I was trying to get the dog off the bed to prevent him from vomiting on the sheets. But then I fell. Tony jumped up and turned on the light to see me twitching violently on the floor, my eyes rolling back. Crazy, alien-esque, WTF-is-going-on twitching, for what seemed like forever but was only about 30-60 seconds, and then it stopped. And there was blood. A scary amount of blood by my head.
Tony called 911, understandably panicked. As he waited for the ambulance to arrive, he lay on the floor and held me in his arms. My eyes were closed, I breathed deeply, gurgling sometimes like a snore. He talked to me, begged me to hold on, keep breathing, just keep breathing. He thought I was dying.
…
I can’t even imagine. My heart breaks for my husband for having to see all that. If it had been the reverse, I don’t know if I could’ve kept it together like he had.
…
The only part of the ER visit I recall is the ultrasound. And the overwhelming relief when they found a heartbeat, steady and strong. Like his father. Tony and I cried and held each other. The baby is fine. The baby is fine.
After many questions, discussions, and exams, the doctors concluded that I likely had a seizure. The blood was from hitting my head on the nightstand, resulting in a lovely cut to my face. Mirrors are scarce in hospitals (gratefully), but I could tell by the reactions of others that I wasn't exactly looking my best.
Now what?
I had to be admitted, but our local hospital did not have the capacity to perform all the tests that needed to be done. They decided to transfer me to Beth Israel Deaconess Medical Center in Boston. There I was in for a battery of tests, a team of doctors, and many more questions. As well as a couple of very scary set backs...
Continued in Part 3...
Thursday, October 21, 2010
Coming Through, Part 1
In July 2009 while in my first trimester of pregnancy, I started having unexplained seizures. This is part 1 of the series that recounts that time. Read the intro here:
Intro
I shall drive my chariot down your streets and cry
It’s me I’m dynamite and I don’t know why
And you shall take me strongly in your arms again
And I will not remember that I ever felt the pain
An activity book of word searches sat on the coffee table. It was a recent Saturday morning and Tony’s mother watched Desmond for us the day before. I figured she came upon the book trying to find something to do while Des was napping. I flipped through the pages and noticed something odd. Only single letters were circled, not whole words in long skinny ovals like you would usually see. Huh. Must be a different way of solving these things.
“Ton, I think your mom is a secret agent sending messages to the government.”
I showed him the book.
“That’s weird.”
He tried to find a connection between the words given and the letters circled. Maybe she only circled the first letters of the words. Or the letters that were not included. It didn’t make sense. We were both perplexed, but we put the book down and didn’t think about it again.
Next Saturday came. Tony was feeding Desmond at the kitchen table. Peaches and yogurt and waffle. Daddy wasn’t putting the waffle pieces down fast enough and Des was letting him know with all sorts of excited “Ahh”s and “Guhh”s.
“One at a time, little man,” Tony said.
I sipped my coffee. The word search caught my eye on the coffee table.
“Hey Ton, did you ask your mom about the book?”
“Shoot, I forgot.”
“No big deal. Just curious.”
Later that night, after the baby was asleep and we were lounging on the couch watching TV, Tony picked up the book.
“Hm. These form words. Something is spelled out. ‘These… last… few… days…”
I peeked over his shoulder and we read it together, out loud, connecting the scattered letters slowly.
“Have… been… scary.”
He closed it. We both remembered something at the same time. This book was given to me last year when I was in the hospital, 14 weeks pregnant and having unexplained seizures. A 911 call, frantic ER trip, 2 ambulance rides, 5 days in the hospital, so many doctors, and countless tests. Tony never left my side.
It’s a 2-3 week timeframe of which I remember very little. But in a rare reversal of roles, this was something that Tony had forgotten about.
“I did this in the hospital one night. I couldn’t sleep.”
…
I could tell he was embarrassed. That I had found something he wrote and that he had forgotten he wrote it in the first place. I asked if I could read the entire thing. He said yes, somewhat reluctantly. I pieced together the letters to form the words at a slow, halting pace in my head…
“Sarah, I love you more than words can describe. I would not know what to do with myself if something were to happen to you. These last few days have been scary for me. I can only imagine how hard they’ve been for you. We’ll get through this together and be stronger because of it. Sleep well, my love. Love, Tony”
Tears fell out of my eyes. I pictured him sitting in the dark next to me as I slept in the hospital bed, circling these letters, one at a time in a puzzle book.
I felt so sorry and guilty for putting him through it all. The word “scary” was ringing in my ears. I recall at the time feelings of confusion, anxiety, exhaustion. He was scared. Maybe it wasn’t the first time he shared that feeling with me, but it’s the first time it sunk in. Like a 2x4 to the face.
Not so much here, or here, but riiiight here. Bam.
Then, pushing through that helpless guilt came a profound sense of gratitude, humility, and love. I couldn’t hug my husband long or tight enough to express it. If I could, I would just hold on to him with both arms forever.
...
When I told him I was going to write about this, he said there was more to read than just the puzzle book. Soon after it happened, Tony had typed up a full detailed account of everything. He never told me about it until now. Apparently my husband had painted the picture I had been looking for all this time. Now I was finally ready to see it.
Reading it was like looking into someone else’s life. I guess I hadn’t realized just how little I remembered. There were tiny moments I could recall through my eyes, like photographs, but most of it I saw for the first time through his. And that’s when I understood how truly scary it all was.
Continued in Part 2...
Intro
I shall drive my chariot down your streets and cry
It’s me I’m dynamite and I don’t know why
And you shall take me strongly in your arms again
And I will not remember that I ever felt the pain
An activity book of word searches sat on the coffee table. It was a recent Saturday morning and Tony’s mother watched Desmond for us the day before. I figured she came upon the book trying to find something to do while Des was napping. I flipped through the pages and noticed something odd. Only single letters were circled, not whole words in long skinny ovals like you would usually see. Huh. Must be a different way of solving these things.
“Ton, I think your mom is a secret agent sending messages to the government.”
I showed him the book.
“That’s weird.”
He tried to find a connection between the words given and the letters circled. Maybe she only circled the first letters of the words. Or the letters that were not included. It didn’t make sense. We were both perplexed, but we put the book down and didn’t think about it again.
Next Saturday came. Tony was feeding Desmond at the kitchen table. Peaches and yogurt and waffle. Daddy wasn’t putting the waffle pieces down fast enough and Des was letting him know with all sorts of excited “Ahh”s and “Guhh”s.
“One at a time, little man,” Tony said.
I sipped my coffee. The word search caught my eye on the coffee table.
“Hey Ton, did you ask your mom about the book?”
“Shoot, I forgot.”
“No big deal. Just curious.”
Later that night, after the baby was asleep and we were lounging on the couch watching TV, Tony picked up the book.
“Hm. These form words. Something is spelled out. ‘These… last… few… days…”
I peeked over his shoulder and we read it together, out loud, connecting the scattered letters slowly.
“Have… been… scary.”
He closed it. We both remembered something at the same time. This book was given to me last year when I was in the hospital, 14 weeks pregnant and having unexplained seizures. A 911 call, frantic ER trip, 2 ambulance rides, 5 days in the hospital, so many doctors, and countless tests. Tony never left my side.
It’s a 2-3 week timeframe of which I remember very little. But in a rare reversal of roles, this was something that Tony had forgotten about.
“I did this in the hospital one night. I couldn’t sleep.”
…
I could tell he was embarrassed. That I had found something he wrote and that he had forgotten he wrote it in the first place. I asked if I could read the entire thing. He said yes, somewhat reluctantly. I pieced together the letters to form the words at a slow, halting pace in my head…
“Sarah, I love you more than words can describe. I would not know what to do with myself if something were to happen to you. These last few days have been scary for me. I can only imagine how hard they’ve been for you. We’ll get through this together and be stronger because of it. Sleep well, my love. Love, Tony”
Tears fell out of my eyes. I pictured him sitting in the dark next to me as I slept in the hospital bed, circling these letters, one at a time in a puzzle book.
I felt so sorry and guilty for putting him through it all. The word “scary” was ringing in my ears. I recall at the time feelings of confusion, anxiety, exhaustion. He was scared. Maybe it wasn’t the first time he shared that feeling with me, but it’s the first time it sunk in. Like a 2x4 to the face.
Not so much here, or here, but riiiight here. Bam.
Then, pushing through that helpless guilt came a profound sense of gratitude, humility, and love. I couldn’t hug my husband long or tight enough to express it. If I could, I would just hold on to him with both arms forever.
...
When I told him I was going to write about this, he said there was more to read than just the puzzle book. Soon after it happened, Tony had typed up a full detailed account of everything. He never told me about it until now. Apparently my husband had painted the picture I had been looking for all this time. Now I was finally ready to see it.
Reading it was like looking into someone else’s life. I guess I hadn’t realized just how little I remembered. There were tiny moments I could recall through my eyes, like photographs, but most of it I saw for the first time through his. And that’s when I understood how truly scary it all was.
Continued in Part 2...
Thursday, October 14, 2010
Coming Through, Intro
Remember that multi-part entry I vaguely referred to a few entries ago?
Well...
Last year we had a scare. It was a bizarre blip on the radar of my generally healthy life, still difficult to explain or talk about. I can’t remember a lot. It was out of nowhere and then never really resolved. But I want to share what I do recall and what I’ve been told happened. Piece it together in a way that makes some kinda sense. Then I can paint a picture, point to it, and say “Here. Here’s what happened.” For me. For my husband. For our son to read one day. Mostly for me.
I hesitate to make it public. It’s profoundly intimate. But maybe sharing it all will resolve something inside me that doctors and medicine can’t. That’s my hope.
I have a feeling it will read like a poor man’s Picasso recreation, with a little Dali and Escher sprinkled in. I’ll call it Crazy Stairs.
Oh no, did that hit Crazy Stairs?
Part 1 to be posted soon. At this point I don’t even know how many installments there will be. It’s ‘coming through’… albeit slowly.
I’ll continue to post Des updates and light-hearted entries in between. And maybe the health recaps once a week or so. Otherwise I might go a little crazy. If I’m not already there...
Well...
Last year we had a scare. It was a bizarre blip on the radar of my generally healthy life, still difficult to explain or talk about. I can’t remember a lot. It was out of nowhere and then never really resolved. But I want to share what I do recall and what I’ve been told happened. Piece it together in a way that makes some kinda sense. Then I can paint a picture, point to it, and say “Here. Here’s what happened.” For me. For my husband. For our son to read one day. Mostly for me.
I hesitate to make it public. It’s profoundly intimate. But maybe sharing it all will resolve something inside me that doctors and medicine can’t. That’s my hope.
I have a feeling it will read like a poor man’s Picasso recreation, with a little Dali and Escher sprinkled in. I’ll call it Crazy Stairs.
Oh no, did that hit Crazy Stairs?
Part 1 to be posted soon. At this point I don’t even know how many installments there will be. It’s ‘coming through’… albeit slowly.
I’ll continue to post Des updates and light-hearted entries in between. And maybe the health recaps once a week or so. Otherwise I might go a little crazy. If I’m not already there...
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