My story is littered with the hypothetical scenarios of what could have happened. And most of those are apparent in my posts, The Beginning, The Longest Week of My Life: Part One, and The Longest Week of My Life: Part Two. But there are a couple things I left out that are really very important.
Most of my what-ifs stem from my time in college. In college, I got engaged. I was over the moon about getting to marry
the man of my dreams, but we decided to wait until after we had both
graduated. I graduated first, December 2002, then he would graduate in
May of 2003. We'd set the date for our simple ceremony for May 24, 2003,
just after graduation and a couple months before he would start his
master's degree.
Before I graduated from college, I had an amazing opportunity. I was offered a student seasonal position working at Walt Disney World. I am a big herald for Disney magic. It's a place, unlike any other, where dreams come true and magic happens. I had an offer, not only to be part of the magic and help make dreams come true, but see behind the scenes. I'd be able to meet other people like me who had Disney fever. I imagine what a boost listing Walt Disney would have on my resume. But all I can do is imagine and dream about it. I turned down the offer because it would happen during the semester when I should plan a wedding. I kick myself for it frequently.
So I was at home planning the wedding, not in Orlando making kids smile. Things were on track for a beautiful wedding, until one visit to see my darling fiance during our semester apart, things disintegrated. Without getting into the details, which have no impact on this hypothetical line, I left the mountains without my ring for the first time in years.
You may be asking yourself what the relevance of these two things are. Well, had I gotten married in May as planned, I would have been working any job I could get my hands on, whether it came with health insurance or not. In my story, I found a job with good pay, great hours, and health insurance. Without health insurance I would have never gone to the ophthalmologist... game over. Had I taken the job with Disney, one of two things could have happened. We could have delayed the wedding until I got back... see previous hypothetical. Or what if I'd been offered a more permanent position with Disney? I probably would have had insurance to fix anything that came up, but would I have noticed anything amiss if I hadn't been doing camera work for my sister? The rest is history.
Because I don't like leaving loose ends, we reconciled our issues that caused the break-up and the once upon a time fiance and I are now happily married, going on twelve years.
Thursday, November 19, 2015
Wednesday, October 28, 2015
Internet Shaming: Not Just for Bodies!
Our society has made sport of shaming, which is, well, a shame.
I've heard things like you're too fat, how can she be a plus-sized model when she's so thin, she's so skinny she must be on drugs, and so on. Of course that's just female boding shaming because that's what I'm keyed into as my demographic. But I've seen male body shaming, I've seen job shaming, and I've seen mommy shaming. (The mommy shaming might be the worst in my eyes since being a parent is hard enough as-is. There is no reason to add unreal expectations on top of that.)
What's worse (or is it, really?) is that these posts are articulated by all types of people, most of whom wouldn't dare utter the words they sculpt with their keyboard to the face of a real person. And, of course, the argument continues that whether you say it to somebody's face or tag them in a tweet, the recipients of these criticisms are all real, live people. I'm not saying that trolls and insensitive commenters are monsters. (I'm sure some are a special sort of jerk, but that's not the point here.) Most of the time it's a case of virtual foot-in-mouth syndrome. Who hasn't said a stupid thing to a person in their life? I know I'm not exempt. But when you can type a response and reread it before you post, there is less leniency for hurtful remarks.
With all of this shaming that would never occur outside of the electronic forum, aneurysm survivors are not exempt. Any survivors really. But in terms of brain aneurysms, people are quick to pipe in, "how can you be a survivor of anything? You look so normal!" Or, "you're not really a survivor. Yours never ruptured." Normality doesn't exempt me. Rupture doesn't define the term. No one knows what goes on in my brain except me, my doctors, and to an extent, you, dear reader.
It took me a very long time to adopt the term "survivor" for myself. When I first started considering the label, I thought it was limited to cancer patients who had beaten the odds and fought like hell to come out on the other side. Did I do something like that? I didn't believe that I could be a survivor since I hadn't toed the line between life and death. I hadn't stood at the gates shouting that I wasn't ready for afterlife. I couldn't be a survivor.
But then I considered everything that happened during the longest week. Even if I hadn't come face to face with the reaper (I can imagine I'd blow raspberries,) I was put through an arduous ordeal that did save my life, and that changed my life. I think of it like walking on a tightrope. There are those who walk the rope between skyscrapers with no net; the survivors who have experienced the worst with rupture, coma, brain damage, and everything bad that comes with it, but survived past it against the odds of a deck stacked against them. They are survivors. There are the acrobats in training, who use a net and maybe have a couple of slips along the way; the ruptures that were caught early enough not to cause severe damage. They are survivors. And then there's me, walking a line strung a couple of feet off the ground between trees in a park; unruptured medium sized annie that was found and coiled in time. I am a survivor.
I don't remember when I came to this conclusion. Maybe it was when I started celebrating my Lifeday on December 22. But I was finally able to call myself a survivor.
But haters gonna hate. There will always be people who tell me I'm not enough of a survivor. There will be people who tell me I'm too overweight to run a 5k to support aneurysm awareness. There will be people who say it was reckless to have risked my life to bring my two children into this world. But my life and everything that comes with it is my business. I've made my choices and am happy with the person I am and the decisions I've made. No one will be able to take my confidence away with a simple mouse click. But to the people who try, I say: "PPPPPTTTTHHHHHHH!"
I've heard things like you're too fat, how can she be a plus-sized model when she's so thin, she's so skinny she must be on drugs, and so on. Of course that's just female boding shaming because that's what I'm keyed into as my demographic. But I've seen male body shaming, I've seen job shaming, and I've seen mommy shaming. (The mommy shaming might be the worst in my eyes since being a parent is hard enough as-is. There is no reason to add unreal expectations on top of that.)
What's worse (or is it, really?) is that these posts are articulated by all types of people, most of whom wouldn't dare utter the words they sculpt with their keyboard to the face of a real person. And, of course, the argument continues that whether you say it to somebody's face or tag them in a tweet, the recipients of these criticisms are all real, live people. I'm not saying that trolls and insensitive commenters are monsters. (I'm sure some are a special sort of jerk, but that's not the point here.) Most of the time it's a case of virtual foot-in-mouth syndrome. Who hasn't said a stupid thing to a person in their life? I know I'm not exempt. But when you can type a response and reread it before you post, there is less leniency for hurtful remarks.
With all of this shaming that would never occur outside of the electronic forum, aneurysm survivors are not exempt. Any survivors really. But in terms of brain aneurysms, people are quick to pipe in, "how can you be a survivor of anything? You look so normal!" Or, "you're not really a survivor. Yours never ruptured." Normality doesn't exempt me. Rupture doesn't define the term. No one knows what goes on in my brain except me, my doctors, and to an extent, you, dear reader.
It took me a very long time to adopt the term "survivor" for myself. When I first started considering the label, I thought it was limited to cancer patients who had beaten the odds and fought like hell to come out on the other side. Did I do something like that? I didn't believe that I could be a survivor since I hadn't toed the line between life and death. I hadn't stood at the gates shouting that I wasn't ready for afterlife. I couldn't be a survivor.
But then I considered everything that happened during the longest week. Even if I hadn't come face to face with the reaper (I can imagine I'd blow raspberries,) I was put through an arduous ordeal that did save my life, and that changed my life. I think of it like walking on a tightrope. There are those who walk the rope between skyscrapers with no net; the survivors who have experienced the worst with rupture, coma, brain damage, and everything bad that comes with it, but survived past it against the odds of a deck stacked against them. They are survivors. There are the acrobats in training, who use a net and maybe have a couple of slips along the way; the ruptures that were caught early enough not to cause severe damage. They are survivors. And then there's me, walking a line strung a couple of feet off the ground between trees in a park; unruptured medium sized annie that was found and coiled in time. I am a survivor.
I don't remember when I came to this conclusion. Maybe it was when I started celebrating my Lifeday on December 22. But I was finally able to call myself a survivor.
But haters gonna hate. There will always be people who tell me I'm not enough of a survivor. There will be people who tell me I'm too overweight to run a 5k to support aneurysm awareness. There will be people who say it was reckless to have risked my life to bring my two children into this world. But my life and everything that comes with it is my business. I've made my choices and am happy with the person I am and the decisions I've made. No one will be able to take my confidence away with a simple mouse click. But to the people who try, I say: "PPPPPTTTTHHHHHHH!"
Monday, October 19, 2015
The Excuses We Believe Are True
I have always felt like I've had an impediment in my life that keeps me from doing things others do.
When I was eight, I was diagnosed with severe asthma. Almost every other Christmas break I spent time in the hospital because my asthma presented complications when I inevitably brought home pneumonia from the holiday party at school. For any other kid, a light case of pneumonia looks like a common cold, but for me, I was gasping for breath and couldn't walk for lack of breathing. My friends would always keep an eye on me to make sure if I was just tired or if my wheezing was so harsh they would need to get my parents or a teacher. When I was in my early twenties, medication finally became available to get my asthma under control, but in the time before that, I kept my physical activity to a minimum and I think I missed out on a lot of the fun stuff kids can do with youth.
When I went to college, I gained the obligatory freshman fifteen my first year. And my second. And so on and so forth. I didn't start thinking about my health until it was too late and I was well over "normal" weight. I didn't feel like I could do anything to reverse it because there was so much to reverse.
When I was 24, I had my aneurysm treated. My husband called me a delicate flower, and although I hated that such a small thing in my brain could suddenly make me "delicate," I believed him. I moved slowly through life for a while, not wanting to bring on a dizzy spell. I had to have regular check ups because it was possible... no, likely that I would have recurring aneurysms. Knowing the outcome of what a ruptured aneurysm could do, I lived my life halfway, never fully committing to anything that might break the delicate flower.
In 2011 I gave birth to the first of two little miracles in my life. Everyone told me how much being a parent changes your life and I believed them. But you never really understand how much you sacrifice for your children until you're in that situation. And I sacrifice more than I should. I have a very hard time thinking that I am important enough and that I should do things for ME. In everything, my family comes first.
These are the reasons I don't do things. These are my excuses. I have been using these excuses my whole life for why I can't... or shouldn't... or won't. But whatever truths lie in these excuses, they remain lies I tell myself to keep my world simple and stress free. (Or at least as stress free as it can be.) I know I lie to myself with my excuses and I know I need to stop, but another excuse lends itself to try to truth itself into my story.
I am not a delicate flower. I am a strong warrior.
I am not a victim. I am a survivor.
I am stronger than my excuses.
I have been focusing on ME a lot this past year, reclaiming the life that I've always wanted for myself. And on Sunday October 11, 2015, I crossed off one of my to dos that I've been using every one of these excuses to keep from doing. I ran my first 5K race. I've been wanting to run one for years, but, excuses.
This one touched my heart. This was the Brain Bolt 5K in Indianapolis, IN. The money raised from this event would benefit Goodman Campbell Brain and Spine for aneurysm awareness, screening, and support. So I signed up and set a moderate fundraising goal for myself, $150. But my friends and family believed in me. They believed in what I have overcome and what I could do.With the overwhelming support they showed, I was able to raise $500 for the cause!
I did it, excuses be damned. I finished the race with a time of 40:10. I was the first survivor to finish the race. I kicked the excuses and found the reasons that I could... I should... I will.
Special Thanks to my donors!
Margaret "Cioc" Mrozek
Adele "Mom" Mrozek
Thomas "Dad" Mrozek
Popabilities Gourmet Popcorn
The Maksl/Petrina Family
Terri Connolly
The Copeland Family
Mandi Hutchins
The King Family
Cheryl Marsh
Katie Walz
Rebecca Hitt
Meghan McGuire
When I was eight, I was diagnosed with severe asthma. Almost every other Christmas break I spent time in the hospital because my asthma presented complications when I inevitably brought home pneumonia from the holiday party at school. For any other kid, a light case of pneumonia looks like a common cold, but for me, I was gasping for breath and couldn't walk for lack of breathing. My friends would always keep an eye on me to make sure if I was just tired or if my wheezing was so harsh they would need to get my parents or a teacher. When I was in my early twenties, medication finally became available to get my asthma under control, but in the time before that, I kept my physical activity to a minimum and I think I missed out on a lot of the fun stuff kids can do with youth.
When I went to college, I gained the obligatory freshman fifteen my first year. And my second. And so on and so forth. I didn't start thinking about my health until it was too late and I was well over "normal" weight. I didn't feel like I could do anything to reverse it because there was so much to reverse.
When I was 24, I had my aneurysm treated. My husband called me a delicate flower, and although I hated that such a small thing in my brain could suddenly make me "delicate," I believed him. I moved slowly through life for a while, not wanting to bring on a dizzy spell. I had to have regular check ups because it was possible... no, likely that I would have recurring aneurysms. Knowing the outcome of what a ruptured aneurysm could do, I lived my life halfway, never fully committing to anything that might break the delicate flower.
These are the reasons I don't do things. These are my excuses. I have been using these excuses my whole life for why I can't... or shouldn't... or won't. But whatever truths lie in these excuses, they remain lies I tell myself to keep my world simple and stress free. (Or at least as stress free as it can be.) I know I lie to myself with my excuses and I know I need to stop, but another excuse lends itself to try to truth itself into my story.
I am not a delicate flower. I am a strong warrior.
I am not a victim. I am a survivor.
I am stronger than my excuses.
I have been focusing on ME a lot this past year, reclaiming the life that I've always wanted for myself. And on Sunday October 11, 2015, I crossed off one of my to dos that I've been using every one of these excuses to keep from doing. I ran my first 5K race. I've been wanting to run one for years, but, excuses.This one touched my heart. This was the Brain Bolt 5K in Indianapolis, IN. The money raised from this event would benefit Goodman Campbell Brain and Spine for aneurysm awareness, screening, and support. So I signed up and set a moderate fundraising goal for myself, $150. But my friends and family believed in me. They believed in what I have overcome and what I could do.With the overwhelming support they showed, I was able to raise $500 for the cause!
I did it, excuses be damned. I finished the race with a time of 40:10. I was the first survivor to finish the race. I kicked the excuses and found the reasons that I could... I should... I will.
Special Thanks to my donors!Margaret "Cioc" Mrozek
Adele "Mom" Mrozek
Thomas "Dad" Mrozek
Popabilities Gourmet Popcorn
The Maksl/Petrina Family
Terri Connolly
The Copeland Family
Mandi Hutchins
The King Family
Cheryl Marsh
Katie Walz
Rebecca Hitt
Meghan McGuire
Thursday, October 15, 2015
In the Aftermath of Surgery: What Has Happened Since Then
Since my realization about life, death, and survival, my life has gone on.
I have returned to various doctors, since I never really stay in the same place for very long, for my neuro follow-ups. I've been through three MRIs and one angiogram and have gotten the all clear every time. On my last visit, where I saw Dr. Hodes (who knows Dr. Alexander and his work! Color me surprised!) in Louisville, he said there's no reason for him to see me for ten years, unless I start getting symptoms. Hurrah!!!
Dr. Alexander is no longer at Duke Hospital. He's now the director of the neurovascular center at Cedars-Sinai in Los Angeles. Around my eleventh Lifeday, I wrote him a note about how grateful I was to him for saving my life. I haven't heard back. He's a very busy man, just look at his bio.
After much discussion, my husband and I decided to start trying for kids under the stipulation that I would plan for a cesarean section. Because MRIs are impossible for pregnant women and any procedure with contrast dye could be harmful to a fetus, there was no way of knowing, once pregnant, if I had an additional active aneurysm. In May of 2010, we had news that I was pregnant with our first child, a girl born on January 5, 2011 via c-section. The aftermath of birth and delivery left me in a constant blue state, which is another post altogether. But that state prompted my mom and my sister to cut us loose from parenting for a weekend. We went to Little Switzerland, NC. Remote and mountainous.
While there, we found a little coffee shop/bookstore. Honestly, it wasn't much of a "find," as it was the only one anywhere around. But we stopped in the morning after an absolutely awe inspiring storm (we watched lightning forming in the clouds through our windows, then when the storm passed, watched the lightning in the same storm from above.) The girl who was working there was flustered and deeply apologetic as she hurriedly tried to set everything up since she was late to work. What rush were we in? We let her go about her morning routine while we perused books. After a few more minutes, she serves us our coffee, crying. She explained that the night before, during the storm, her boyfriend had to be rushed to the hospital. (If you haven't gotten that this place is remote and that rushing to the hospital is a big deal, look at this.) Her boyfriend had a ruptured aneurysm in his brain and she was deeply worried about him.
My mouth hit the floor. I've never felt more strongly that I was exactly where I belonged at that moment. I tried to soothe her and let her know how sorry I was that she had to experience this, but there was hope. I told her that although mine hadn't ruptured, I had a brain aneurysm. I was breathing proof in front of her that miracles happen and that modern science has come a long way to prevent death where, in the before times, it was almost certain. I don't know who that woman was or how her boyfriend fared, but I hope that my presence that morning helped calm her nerves.
Since then, I've learned so much more about aneurysms than I knew, even at that chance encounter. All of which will follow in another post. (It's a lot of information and I'm still wrapping my head around it.
Everything happens for a reason. And I'm starting to feel like everything happened for me to help be a change for aneurysm awareness. This is me, figuring out how to do that.
I have returned to various doctors, since I never really stay in the same place for very long, for my neuro follow-ups. I've been through three MRIs and one angiogram and have gotten the all clear every time. On my last visit, where I saw Dr. Hodes (who knows Dr. Alexander and his work! Color me surprised!) in Louisville, he said there's no reason for him to see me for ten years, unless I start getting symptoms. Hurrah!!!
Dr. Alexander is no longer at Duke Hospital. He's now the director of the neurovascular center at Cedars-Sinai in Los Angeles. Around my eleventh Lifeday, I wrote him a note about how grateful I was to him for saving my life. I haven't heard back. He's a very busy man, just look at his bio.
After much discussion, my husband and I decided to start trying for kids under the stipulation that I would plan for a cesarean section. Because MRIs are impossible for pregnant women and any procedure with contrast dye could be harmful to a fetus, there was no way of knowing, once pregnant, if I had an additional active aneurysm. In May of 2010, we had news that I was pregnant with our first child, a girl born on January 5, 2011 via c-section. The aftermath of birth and delivery left me in a constant blue state, which is another post altogether. But that state prompted my mom and my sister to cut us loose from parenting for a weekend. We went to Little Switzerland, NC. Remote and mountainous.
While there, we found a little coffee shop/bookstore. Honestly, it wasn't much of a "find," as it was the only one anywhere around. But we stopped in the morning after an absolutely awe inspiring storm (we watched lightning forming in the clouds through our windows, then when the storm passed, watched the lightning in the same storm from above.) The girl who was working there was flustered and deeply apologetic as she hurriedly tried to set everything up since she was late to work. What rush were we in? We let her go about her morning routine while we perused books. After a few more minutes, she serves us our coffee, crying. She explained that the night before, during the storm, her boyfriend had to be rushed to the hospital. (If you haven't gotten that this place is remote and that rushing to the hospital is a big deal, look at this.) Her boyfriend had a ruptured aneurysm in his brain and she was deeply worried about him.
My mouth hit the floor. I've never felt more strongly that I was exactly where I belonged at that moment. I tried to soothe her and let her know how sorry I was that she had to experience this, but there was hope. I told her that although mine hadn't ruptured, I had a brain aneurysm. I was breathing proof in front of her that miracles happen and that modern science has come a long way to prevent death where, in the before times, it was almost certain. I don't know who that woman was or how her boyfriend fared, but I hope that my presence that morning helped calm her nerves.
Since then, I've learned so much more about aneurysms than I knew, even at that chance encounter. All of which will follow in another post. (It's a lot of information and I'm still wrapping my head around it.
Everything happens for a reason. And I'm starting to feel like everything happened for me to help be a change for aneurysm awareness. This is me, figuring out how to do that.
Monday, October 5, 2015
In the Aftermath of Surgery: One Year Later
It wasn't until a year later when it really hit me about everything I had been through. Because the longest week happened so quickly, nothing really had time to set in. During that week, I was just a pawn, being moved at the discretion of a higher power. 2004 was also a busy year for me, so the perpetual motion through the calendar was another reason I hadn't pondered on my experience. But when I started reflecting back on my whirlwind of a year, it all hit me like an elephant on a rampage.
To recap, I was released from Duke Hospital on December 23, 2003, after having my brain aneurysm coiled to prevent rupture that was estimated to happen in roughly six months. I was released to my family for recovery, but since I hadn't had a rupture, I didn't need any kind of physical therapy. So life went on almost like before.
When I got home, I took a few days off work to recuperate from surgery. During my break from reality, life managed to keep going. Before I was diagnosed, I had applied for a marketing job in the NC mountains. My boyfriend was there and I wanted to move closer to him. And on the second day out of the hospital, I got an interview. So I pushed through recovery to be travel ready for my interview. I nailed it and got the job.
So a month after surgery, I went in to Dr. Alexander to have my aneurysm checked. I cleared with flying colors! The platinum was clotting the blood flow nicely. I still had an aneurysm resting on my optic nerve, but it was not active. So for all intents and purposes, I would always have an aneurysm, and the tell-tale blind spots that detected it. Because I was so young and had a family history of aneurysms (my maternal grandfather had abdominal aneurysms), I was required to check in every five years for an MRI to make sure I didn't have any new bulges. Shortly after my neuro check in, I moved to the North Carolina mountains to take the new job. The things they didn't tell me after brain surgery though...
I was not prepared for my thoughts to slow down as much as they did. I was not ready to lose memories like I did. I was expecting headaches the first couple months. I was surprised that after surgery, I started getting frequent nosebleeds, something Dr. Alexander assured me was not a side effect from the surgery. And the vertigo that made my world turn upside down was expected, but when it first started, it was terrifying. Rooms would spin and to keep safe I would have to sit on the floor immediately or grab onto someone for support. Sometimes everything would turn upside down even if I was laying in bed, making it impossible for me to get up for several minutes. My loved ones also noticed a change in my facial features as well. At the beginning of the day, everything was as per usual, but as the day progressed, my left eyelid would droop. It's the sign that I'm ready for sleep because by body just can't hold it together anymore.
Getting back to the story, I held my new job for a month and a half. My brain couldn't keep up with the demands of the, lets be honest, mediocre job. I had trouble learning the basics of the company base. It was then, and is still today, the only job I've been fired from. So here I was, living with my boyfriend, jobless, and I get the piece of paper that anyone who has had an extended hospital stay dreads. The bill. O. M. G. I hadn't seen a number that big in relation to my name. I had no job. I had no income. I had a slight panic attack.
A lot of charges were covered by the insurance I had with the job I was working during the longest week. Thank goodness I had that! But the end total had me on the phone with the hospital figuring out how to settle up. After a life saving surgery, no person should worry about how they are going to live and pay off a hospital bill in the hundred thousands of dollars range. But I was very lucky that Duke had a program where "experimental" surgeries could be covered by the hospital. My fuzzy memories don't remember all the details, but Duke waived my charges! I assume that because coiling was still an emerging technology in 2003, that procedure fell under the "experimental" category. What a huge relief!!!
Shortly after I moved in with my boyfriend, he proposed. We wanted a small wedding, so it was quick in planning and we married on May 29, 2004. I believe there was a part of him that wanted to spend as much time as possible as my husband, and since I was going back for semi-frequent check-ups on my brain, that meant I was a time bomb. Or, as he poetically put it, more frequently that I wanted, a delicate flower. Ugh. I was not delicate. I was tough. But even so, there was a major condition on our union: no kids.
There were two pop culture happenings that clued me in to how lucky I was. The first was the pilot episode of Grey's Anatomy, where the title character helps diagnose a ruptured aneurysm. The second was the movie Jersey Girl, where Ben Affleck's character raises his daughter on his own after his wife suffers a fatal aneurysm rupture during childbirth. My husband was trying hard to shield me from any danger from the aneurysm by placing the restriction about kids in our marriage. So childbirth was right out. Thanks, Hollywood.
After we got married, I jetted off with my mom and sister for an Alaskan cruise. This was about six months post-coiling... the estimated time of my rupture. The vertigo on a rocking boat was extreme and I was leaning on my mom for support frequently. Both were keyed in to my well-being 100% of the time we were away. They even thought I was a delicate flower. But the trip was amazing, with only one regret. Because of the time difference coupled with the headaches and vertigo, I wasn't able to keep myself awake much past sundown. So I missed out on the Northern Lights. It's on the bucket list.
At my first anniversary (or annie-versary to some survivors, or for me more recently, Lifeday) I had been reemployed for eight months, I had my hospital slate wiped clean, I'd gotten married, I took a trip of a lifetime, and I had a droopy eye. After all of this it finally hit me. We were driving in the car somewhere... I don't even remember the destination. My husband and I are, as we put it, emotional chameleons. We can sense change in emotion and sometimes reflect it (which makes the cycle of fighting and forgiving a nearly impossible feat.) He felt my mood change and glanced over to see me trying to hold back sobs with tears streaming down my face. When he asked me what was wrong, all I could get out was "I'd be dead now." I couldn't articulate the thoughts and memories that hit me like a tornado, swirling around in my brain. All I could do was be grateful for the Hand of God having guided my journey.
After that year I was steadfast in my conviction. If there were no God and everything that happens is coincidence and luck, then I don't believe I would be alive. I have no question that God nudged me in the direction of surgery so that I could do something. I'm still figuring out what that something is, but I have a small purpose, spreading awareness of brain aneurysms. If you haven't noticed, in the upper right hand column of this page is a link where you can make a donation on my behalf for my 5k run for awareness. If you're complelled and able, any size donation would be really cool of you.
To recap, I was released from Duke Hospital on December 23, 2003, after having my brain aneurysm coiled to prevent rupture that was estimated to happen in roughly six months. I was released to my family for recovery, but since I hadn't had a rupture, I didn't need any kind of physical therapy. So life went on almost like before.
When I got home, I took a few days off work to recuperate from surgery. During my break from reality, life managed to keep going. Before I was diagnosed, I had applied for a marketing job in the NC mountains. My boyfriend was there and I wanted to move closer to him. And on the second day out of the hospital, I got an interview. So I pushed through recovery to be travel ready for my interview. I nailed it and got the job.
So a month after surgery, I went in to Dr. Alexander to have my aneurysm checked. I cleared with flying colors! The platinum was clotting the blood flow nicely. I still had an aneurysm resting on my optic nerve, but it was not active. So for all intents and purposes, I would always have an aneurysm, and the tell-tale blind spots that detected it. Because I was so young and had a family history of aneurysms (my maternal grandfather had abdominal aneurysms), I was required to check in every five years for an MRI to make sure I didn't have any new bulges. Shortly after my neuro check in, I moved to the North Carolina mountains to take the new job. The things they didn't tell me after brain surgery though...
I was not prepared for my thoughts to slow down as much as they did. I was not ready to lose memories like I did. I was expecting headaches the first couple months. I was surprised that after surgery, I started getting frequent nosebleeds, something Dr. Alexander assured me was not a side effect from the surgery. And the vertigo that made my world turn upside down was expected, but when it first started, it was terrifying. Rooms would spin and to keep safe I would have to sit on the floor immediately or grab onto someone for support. Sometimes everything would turn upside down even if I was laying in bed, making it impossible for me to get up for several minutes. My loved ones also noticed a change in my facial features as well. At the beginning of the day, everything was as per usual, but as the day progressed, my left eyelid would droop. It's the sign that I'm ready for sleep because by body just can't hold it together anymore.
Getting back to the story, I held my new job for a month and a half. My brain couldn't keep up with the demands of the, lets be honest, mediocre job. I had trouble learning the basics of the company base. It was then, and is still today, the only job I've been fired from. So here I was, living with my boyfriend, jobless, and I get the piece of paper that anyone who has had an extended hospital stay dreads. The bill. O. M. G. I hadn't seen a number that big in relation to my name. I had no job. I had no income. I had a slight panic attack.
A lot of charges were covered by the insurance I had with the job I was working during the longest week. Thank goodness I had that! But the end total had me on the phone with the hospital figuring out how to settle up. After a life saving surgery, no person should worry about how they are going to live and pay off a hospital bill in the hundred thousands of dollars range. But I was very lucky that Duke had a program where "experimental" surgeries could be covered by the hospital. My fuzzy memories don't remember all the details, but Duke waived my charges! I assume that because coiling was still an emerging technology in 2003, that procedure fell under the "experimental" category. What a huge relief!!!
 |
| Wedding Day 2004 |
There were two pop culture happenings that clued me in to how lucky I was. The first was the pilot episode of Grey's Anatomy, where the title character helps diagnose a ruptured aneurysm. The second was the movie Jersey Girl, where Ben Affleck's character raises his daughter on his own after his wife suffers a fatal aneurysm rupture during childbirth. My husband was trying hard to shield me from any danger from the aneurysm by placing the restriction about kids in our marriage. So childbirth was right out. Thanks, Hollywood.After we got married, I jetted off with my mom and sister for an Alaskan cruise. This was about six months post-coiling... the estimated time of my rupture. The vertigo on a rocking boat was extreme and I was leaning on my mom for support frequently. Both were keyed in to my well-being 100% of the time we were away. They even thought I was a delicate flower. But the trip was amazing, with only one regret. Because of the time difference coupled with the headaches and vertigo, I wasn't able to keep myself awake much past sundown. So I missed out on the Northern Lights. It's on the bucket list.
 |
| Alaska, 2004 |
After that year I was steadfast in my conviction. If there were no God and everything that happens is coincidence and luck, then I don't believe I would be alive. I have no question that God nudged me in the direction of surgery so that I could do something. I'm still figuring out what that something is, but I have a small purpose, spreading awareness of brain aneurysms. If you haven't noticed, in the upper right hand column of this page is a link where you can make a donation on my behalf for my 5k run for awareness. If you're complelled and able, any size donation would be really cool of you.
Saturday, September 26, 2015
The Longest Week of My Life: Part Two
On day four I returned to Duke hospital early in the morning for my angiogram. Dr. Alexander was doing this procedure, a catheterization with contrast dye, to get a more detailed "map" of my cranial circulation. It was a short procedure and while I was in recovery they checked me in for the long haul. I was transferred up to my room as soon as I was ready and started the long wait.
If I haven't given the impression, my neurosurgeon, Dr. Michael Alexander, was absolutely fantastic. A little while after I was in my room he came up and talked to my family and me about the procedure that we were expecting the next day. Clipping is an intracranial procedure, which means that I would be shaved and a piece of my skull would be removed, so Dr. Alexander could place a small clip at the base of the bulge to prevent blood from filling it further. It would take between three and five hours to complete the procedure and would happen the following day because the size of my aneurysm was of some concern of rupturing. Of course I was scared by this point (which is a contributing factor about why my memories are so fuzzy) because it was such an invasive procedure. He told me that with the map from the angiogram, he felt very confident in executing the procedure, so I had little doubt that he would do a good job. But of course there were great risks... there always are.
My sister was excited. Not about the procedure, but because she wanted to shave my head for the operation. That's what sisters are for, right?
But before that, the order of the day was more tests to get everything ready for the clipping. Blood tests. CT scan. I had to stop eating twelve hours before the procedure, as with any procedure of this caliber. It was a lot of being shuffled around and prodded. And a lot of waiting. I remember watching a lot of t.v. to get my mind off of things. Television programs that I could dissect for good and bad edit sequences and camera angles. This was the device, the deus ex machina in my story, that brought me to this place.
At about 9 pm, after test after test, a nurse comes in to give me some pre-op medication... an anti seizure drug through my IV since intracranial surgeries are more prone for seizure. It was for my protection. Up to this point I could tell you that the only things I was allergic to were pollen, dander, pine nuts, and dust mites. I don't remember the name of the drug (fuzzy memories strike again), but I remember my skin feeling like it was crawling with a thousand millipedes. Every piece of me itched so badly during the injection that I was standing on my hospital bed getting everyone in the room to help me scratch. I was in agony. So, taking pity on me, she checks with the doctor if I can be cleared for benadryl. YES! So alternating injections, I have anti seizure and benadryl in my system. When both were done, so was I. I slept hard and fast and before I knew it, the morning of surgery arrived.
Day five begins. By this time, everyone was by my side. My family, my boyfriend, and all of his family were by my bedside. I was so grateful everyone was here and as the orderly wheeled me down to the OR, I was tearfully saying my goodbyes. I was clasping hands, not wanting to let go. Because, for as confident I was in the precision of my surgeon's hands and skills, I knew these were my final goodbyes to my loved ones, because if I went in that OR, I wasn't coming out. Yes, my fear level was off the charts. And at the nth hour, a nurse comes through the OR door and tells the orderly to take me back to my room.
WHAT???
I just said my goodbyes. I was ready to meet my life's author. And I was denied entrance to the OR. A couple hours later (and let me tell you, by then, my hunger was extreme!) Dr. Alexander arrives and tells us what happened. The good doctor had ordered an extra test than usual, the CT scan, which revealed that because of my unique plumbing, removing the piece of my skull would have certainly nicked a vein and I would have died on the operating table. He hadn't been quite that graphic, but that was the message. So, I had been saying my final goodbyes, but that angel of a nurse saved me. So now what?
Dr. Alexander explained there was another surgical option that I was a candidate for. Endovascular coiling was a relatively new procedure that takes two to four hours where a catheter is run through the femoral artery to the site of the aneurysm. (Much like the angiogram I had the day before.) Once there, a thin platinum wire is coiled into the aneurysm, filling it, reducing the blood flow within, and promoting clotting around the wire. Because of my circulatory system issues, this was now my only option. I didn't like the word "new,"when this procedure was being described, but I understood it as a last chance before the estimated six month deadline. Sign me up. Again.
And for goodness sake, take the razor out of the twitchy fingers of my older sister! I would not have to have a hair on my head touched, or a visible battle scar from an intracranial procedure. I could be happy about that.
The new procedure had to wait for a vacant spot in the OR... after lunch. I was starving when I was taken down to the OR, but otherwise feeling good. What were tearful goodbyes that morning were now warm see you laters. We were all joking and keeping good spirits, to the delight of the hospital staff. I can say that my family defies traditionalism and usually rely on humor when others would distress and worry. (That's not saying that the worry wasn't there.) I went into the OR and got all set on the table for the coiling. As I was drifting under from the anesthesia, the Latin beats of Sade crooning lyrics of "Smooth Operator" made me confident that I was in good hands.
I woke up in recovery in agony. When all other memories are fuzzy, this one remains clear. I woke, screaming from pain because two nurses were taking turns applying extreme pressure to my groin, the entry point for the coiling catheter. I wasn't clotting properly and they wouldn't ease up until I did. (Now they inject a collagen plug to mend the entry site.) Finally, my blood clotted and they eased back, keeping a wary eye on me. A very satisfied Dr. Alexander told me the procedure was a success and although I would have a slight headache, I would recover nicely. The only problem was getting the femoral artery to mend properly and stop bleeding. So I went back to my room after I'd stabilized and was kept overnight for observation and recovery.
On the sixth day I woke in the hospital, after poking and prodding from the nurses all night, to orders that I was being released later that day after being briefed on how to care for my headache, keeping my incision site clean and bandaged, and general limitations on my activities during the recovery process. I was scheduled to follow up with Dr. Alexander in a week and have an MRA shortly after, to be scheduled later, to determine the success of the procedure. I was rolled out of Duke Hospital on December 23, 2003, a new person with my whole life stretched before me.
But stay tuned for more!
If I haven't given the impression, my neurosurgeon, Dr. Michael Alexander, was absolutely fantastic. A little while after I was in my room he came up and talked to my family and me about the procedure that we were expecting the next day. Clipping is an intracranial procedure, which means that I would be shaved and a piece of my skull would be removed, so Dr. Alexander could place a small clip at the base of the bulge to prevent blood from filling it further. It would take between three and five hours to complete the procedure and would happen the following day because the size of my aneurysm was of some concern of rupturing. Of course I was scared by this point (which is a contributing factor about why my memories are so fuzzy) because it was such an invasive procedure. He told me that with the map from the angiogram, he felt very confident in executing the procedure, so I had little doubt that he would do a good job. But of course there were great risks... there always are.My sister was excited. Not about the procedure, but because she wanted to shave my head for the operation. That's what sisters are for, right?
But before that, the order of the day was more tests to get everything ready for the clipping. Blood tests. CT scan. I had to stop eating twelve hours before the procedure, as with any procedure of this caliber. It was a lot of being shuffled around and prodded. And a lot of waiting. I remember watching a lot of t.v. to get my mind off of things. Television programs that I could dissect for good and bad edit sequences and camera angles. This was the device, the deus ex machina in my story, that brought me to this place.
At about 9 pm, after test after test, a nurse comes in to give me some pre-op medication... an anti seizure drug through my IV since intracranial surgeries are more prone for seizure. It was for my protection. Up to this point I could tell you that the only things I was allergic to were pollen, dander, pine nuts, and dust mites. I don't remember the name of the drug (fuzzy memories strike again), but I remember my skin feeling like it was crawling with a thousand millipedes. Every piece of me itched so badly during the injection that I was standing on my hospital bed getting everyone in the room to help me scratch. I was in agony. So, taking pity on me, she checks with the doctor if I can be cleared for benadryl. YES! So alternating injections, I have anti seizure and benadryl in my system. When both were done, so was I. I slept hard and fast and before I knew it, the morning of surgery arrived.
Day five begins. By this time, everyone was by my side. My family, my boyfriend, and all of his family were by my bedside. I was so grateful everyone was here and as the orderly wheeled me down to the OR, I was tearfully saying my goodbyes. I was clasping hands, not wanting to let go. Because, for as confident I was in the precision of my surgeon's hands and skills, I knew these were my final goodbyes to my loved ones, because if I went in that OR, I wasn't coming out. Yes, my fear level was off the charts. And at the nth hour, a nurse comes through the OR door and tells the orderly to take me back to my room.
WHAT???
I just said my goodbyes. I was ready to meet my life's author. And I was denied entrance to the OR. A couple hours later (and let me tell you, by then, my hunger was extreme!) Dr. Alexander arrives and tells us what happened. The good doctor had ordered an extra test than usual, the CT scan, which revealed that because of my unique plumbing, removing the piece of my skull would have certainly nicked a vein and I would have died on the operating table. He hadn't been quite that graphic, but that was the message. So, I had been saying my final goodbyes, but that angel of a nurse saved me. So now what?
And for goodness sake, take the razor out of the twitchy fingers of my older sister! I would not have to have a hair on my head touched, or a visible battle scar from an intracranial procedure. I could be happy about that.
The new procedure had to wait for a vacant spot in the OR... after lunch. I was starving when I was taken down to the OR, but otherwise feeling good. What were tearful goodbyes that morning were now warm see you laters. We were all joking and keeping good spirits, to the delight of the hospital staff. I can say that my family defies traditionalism and usually rely on humor when others would distress and worry. (That's not saying that the worry wasn't there.) I went into the OR and got all set on the table for the coiling. As I was drifting under from the anesthesia, the Latin beats of Sade crooning lyrics of "Smooth Operator" made me confident that I was in good hands.
I woke up in recovery in agony. When all other memories are fuzzy, this one remains clear. I woke, screaming from pain because two nurses were taking turns applying extreme pressure to my groin, the entry point for the coiling catheter. I wasn't clotting properly and they wouldn't ease up until I did. (Now they inject a collagen plug to mend the entry site.) Finally, my blood clotted and they eased back, keeping a wary eye on me. A very satisfied Dr. Alexander told me the procedure was a success and although I would have a slight headache, I would recover nicely. The only problem was getting the femoral artery to mend properly and stop bleeding. So I went back to my room after I'd stabilized and was kept overnight for observation and recovery.
On the sixth day I woke in the hospital, after poking and prodding from the nurses all night, to orders that I was being released later that day after being briefed on how to care for my headache, keeping my incision site clean and bandaged, and general limitations on my activities during the recovery process. I was scheduled to follow up with Dr. Alexander in a week and have an MRA shortly after, to be scheduled later, to determine the success of the procedure. I was rolled out of Duke Hospital on December 23, 2003, a new person with my whole life stretched before me.
With platinum in my head after a week filled with strife, I could now live a long happy life.
But stay tuned for more!
Wednesday, September 16, 2015
The Longest Week of My Life: Part One
'Twas the week before Christmas and on Blue Ridge Road, a young lady was shaking from what she'd just been told.
After a barrage of tests with my ophthalmologist in November of 2003, he'd discovered that I had severe blind spots in my left eye. My left eye only. My camera eye. They were pinpricks of blind spots, enough to cause irritation if the left eye was the only one in use, but not enough to alter my vision. The doctor didn't know what caused them, and that bothered him. Like any great thinker, he was irritated that he couldn't give me a sound conclusion and he didn't give up on me. Instead, he scheduled me to go in for an MRI at Rex Hospital. I had no idea what to expect. Had I known, I would have been a lot more scared going into it. (Not that the unknown doesn't cause me slight panic, but I'm more at ease with it.) That seems to be a recurring theme in my story: "I would have been a lot more scared if I had known..."
So if you have never experienced an MRI, let me describe an example. Imagine you are laying in bed. Now imagine the bed is the bottom of a upside-down fiberglass canoe; narrow, hard, and slippery. But you manage to lay on it, imagining you're back in middle school playing "light as a feather, stiff as a board." No problem. But then someone puts a bottomless birdcage over your head. Okay, so that feels a little Hannibal Lecter-y, but fine. Then they shove that canoe into a hollowed out log that's wide enough for the canoe and the birdcage, but that's it. Your arms are pinned, you can't move your head, and if you try to move, they start over from the beginning. Stay completely still. Next, they (Whoever 'they' are in this analogy, I don't know. In reality, it's the machine. Maybe Sasquatch, since this seems to be an outdoor comparison.) start beating on the log with sticks. Sometimes instead of beating on the log, they drag a dagger across the bark. All the while, voices remind you to stay completely immobile... or else. This goes on for all time. Or 30 minutes to an hour.Terrified? I was. I have since grown accustomed to the test and practice self-hypnosis techniques. The MRI is now shrouded in my happy place and the only reason they have to restart my tests is if I fall asleep in the tube and shift my head. True story.
Okay, back to the story. I finished my MRI and went home. It was early evening, so the order of the day was dinner, play around on my computer, read a little, then bed. At, we'll say, 9 pm, my phone rings and I assume I'll be chatting with my boyfriend instead of reading a book before bed. It was the doctor. And at that point I should have been scared... what doctor calls so late? But I've discovered I take life at an easy stride. Whatever will be will be, right? The doctor told me the cause of my blind spots was an aneurysm resting on my optic nerve and it was disrupting the signal to my brain. I understood about three of those words put together, but knew I needed to reply. My response seems so laughable to me now, "Is it moving?"
So my friendly, ever-vigilant ophthalmologist started calling to set up an appointment for me to consult with a neurologist. (Didn't I say he deserved flowers?) I got off the phone and told my mom, my dad, my sister, and my boyfriend. I suppose they all understood the implications of the news, but I was still happily ignorant in my joy of life. Que sera sera. I should have registered the look of concern on my mom's face or the tone of slight anxiety in my dad's usually steady voice. That was day one.
Day two was like any other day. I went to work (as a file documentarian for a third-party information company) and let my manager know that I'd be needing some time for doctor's visits. Got a call confirming my appointment with the neurologist the next day. No biggie.
Day three. Here's where things start getting really fuzzy because everything started happening so fast. I call it the longest week of my life, but it was also the fastest (in kind of like "the days are long and the years are short" way.) I went to the neurologist with my mom, located at Duke Medical Center. For the first time, I understood what was happening. The neurologist, Dr. Michael Alexander, explained an aneurysm: It's a ballooning of the blood vessel wall where that part has grown thin. The pressure of blood flow expands that part of the vessel, causing it to extend out from the blood vessel. This can happen anywhere in the body, but because mine was in my brain, it posed a greater risk. The blood doesn't stop flowing and the balloon doesn't stop filling. I know what happens to a latex balloon when there's too much air... so I knew what would happen to me. If it ruptured I would have bleeding in my brain and I knew that could cause brain damage. Shit just got real. Dr. Alexander showed me pictures of my aneurysm and told me it was a saccular aneurysm measuring 7mm. He said given the location and size, he estimated I had six months before it ruptured. There was a procedure called clipping, essentially putting a metal clip around the base of the aneurysm, stopping blood flow into the balloon and drastically reducing the chance of rupture. Sign me up.
But wait... there's more! As if having an aneurysm wasn't enough, I had another circulatory anomaly. We'll pause here for some audience participation. Put the index and middle finger of your right hand on your neck, just to the right of your throat. Feel that? Yup... it's your pulse. Repeat on the left side. Still feel the pulse? Awesome! You're normal! As for me, when I repeat on the left, it doesn't matter how far I dig my fingers in, there's nothing. Maybe a ghost beat from my fingertip, but that's it. Dr. Alexander told me about my anomaly and then took out his stethoscope to double check. Gave a low chuckle and shook his head. "Niki, You don't have a left carotid artery. It just isn't there." Every doctor since then has done the exact same thing when I tell them about it. I agree, it's so incredible that it's impossible to believe without checking. Sometimes I double check, even now. (As an aside, I remember a time at Girl Scout camp when I was about eleven, we were talking about the circulatory system during a CPR class and they suggested checking a pulse at the carotid artery and I couldn't feel mine. Maybe I should have told someone?)
The office made my arrangements for me to have an angiogram the next day and get checked into the hospital right afterward. I took a deep breath and cried. Thank goodness my mom was there with me. I had just turned 24. I wasn't ready for life, or the risk of it ending.
And even now, this story makes my eyes misty, recalling all the what ifs and thanking God for writing the map. So in upcoming posts you can look forward to the rest of the story, the aftermath, and a little more information that I've learned about aneurysms in the 12 years since then. Stay tuned.
Saturday, September 12, 2015
The Beginning
This My story begins when I was 7 or 8.
I go back so far only because I feel like everything seemed to lead up to the big event. If certain things had not happened as they did, I might not have been so lucky. I feel very strongly, looking back on everything, that God was writing my story from the beginning. I just followed the pages, willingly, and now have the ability to share the story of how it all happened.So let's rewind to... 1987 or so. I don't really remember the exact date or year, as most things are fuzzy in my memory. I know that my sister was in high school taking classes in television production. She loved the school, she loved the classes, she loved her class mates, and she loved her teacher. I adored my sister; still do really. She's always been there for me. So seeing her passion for television production made me want to do it too. I was lucky enough to attend an elementary school that had, for lack of a better term, A.V. classes. They weren't really introductory television, but I taped student government speeches and school plays. My sister was right. It was fun.
I'll pause for a little background information. These were the days when video was captured onto VHS video tapes, before memory cards and the cloud. Most schools in those days were outfit with bulky camcorders that mounted on a tripod. They weighed in the neighborhood of 15 pounds alone and looked something like the one to the right. If you weren't using a tripod, you hoisted the machine onto your shoulder and stabilized it with your right hand on the hand grip near the lens. Then you set up your shot through the viewfinder with your right eye while closing your left so the live image and the electronic image don't get interposed and give you a major headache.
I know first hand about the headache because I have a lot of trouble closing my left eye while keeping the right open. (From what I understand this is unusual for a right-handed person like myself.) But I can keep my left eye open while closing the right very easily. Luckily for me, camera manufacturers encountered this and most camcorders had a sliding viewfinder, so my left eye saw it all and my right eye got to rest.
Trust me, this is all important. Stick with me.
I went to middle school and took more t.v. production classes, most of which focused on creating a video yearbook for the school. But by the time I got to high school I knew television was my medium for art. No, I'm not saying I was artistic. I still had a lot to learn. But I loved that I could get behind a camera and create something that could be meaningful... newsworthy or entertaining. And it wasn't all about camera work... I could write or direct. I could design storyboards and edit. There was so much I could do!
And so, my education brought me to the same high school my sister had attended, William G. Enloe High School in Raleigh, NC. And (lucky me!) the same video production teacher was still there! So on my first day of classes my teacher, Curry Leslie, made me realize how much I had to learn. He was a veteran of the television production field and had real world applications to teach us. We drafted stories and envisioned music videos. We aired live daily news shows for the school. I had the opportunity to wear so many hats... master control, director, editor, CG, camera operator, and the list goes on... and I loved it all. This was my calling. This is what I was meant to do. And Mr. Leslie helped me by providing boundless opportunity.
In my sophomore year, we were able to partner with a local t.v. station to air a for-teens, by-teens documentary program highlighting issues we face in high school and offered solutions. And it would be broadcast! So we developed a production company and planned our first episode of "On the Edge," focusing on substance use and abuse. I stayed behind the camera, planning and providing camera support. All with my left eye. Mr. Leslie even commented on it a couple times. It didn't matter because our work on getting that documentary aired won us a regional Emmy Award. And then we won another one the year after that.
I had two Emmys before leaving high school. Yes, it was a group effort and a group award. Yes, the documentary was what you might expect from high school students. But I was proud because of the work we put into it. This was going to be my career.
 | |||
| My mom, me, my dad and my sister after my graduation from WCU |
During that time my sister wanted my help taking pictures for her new side income: eBay sales. I was more than happy. I would set up the camera, frame the shot, press the button, then post the sale. Digital cameras still had viewfinders then. So I was still using my left eye to frame the shots. But I wasn't able to focus them to my liking. Something just wasn't right.
After, my dad suggested I go see his ophthalmologist to make sure everything was okay. I wish I could remember the doctor's name. I would send him a beautiful bouquet of irises (Get it? Har har!) because when it comes down to it, that doctor, a relentless ophthalmologist, saved my life.
Next came the longest week of my life. Which is, coincidentally, the name of the next chapter.
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