I just wanted to let everyone know I'm taking a little break from blogging. I didn't continue my story yesterday and I probably won't today either. But I promise I will resume tomorrow!
For those of you who don't know, today is my 26th birthday. When I was born my parents were told that I would probably not live long - a day, a week, a month, a year, etc. Then in the summer of my 8th grade year I was reading a letter that my best friend at the time, Tarah, had written to a boy we met off the internet. She told him she was worried because she had heard a friend of hers would only live to be 20. I was concerned, because all of her friends were my friends as well, so I asked her "Who?!" She replied sadly, "You." I guess her mother and my mother had been talking, and that's what she told her.
My 20th birthday of doom was burned into my brain. I asked Dr. Fox and he didn't exactly confirm or deny this exact year, but just reminded me that I am a delicate case and that the reason we moniter my health so closely is to hopefully prolong my life as long as possible. I asked him how I would die. I mean, how does someone with my disorder suddenly die at 20? He said I probably would someday get pneumonia and just wouldn't recover. Scared, I asked him if he thought I could ever have children. Surprisingly, people ask me this question a lot. His initial response was to remind me of how extremly winded I get just walking up a flight of stairs. He was honest with me and said that I may be able to have one child - and even that would be extremly risky. I would have to bed on bed rest a majority of the time and definitely have a C-Section.
I look back at my life immediately following this information. High School is confusing enough of a time without all this looming over your head. I mean, how do you plan for the future when you don't think you're going to have one?
Since my 20th birthday I have felt like I am living on borrowed time. And every year feels like a huge acheivement. Some people hate their birthdays, but my birthday is always a celebration of God's love and mercy. I am here. I have a family who loves me. I have more friends than I can count. I have a wonderful husband. I have a beauitful new house. My health is questionable, I did have a huge scare last year and spent another two months in the hospital. I may not like having a tube in my throat. The economy is definitely putting a strain on our finances (like everyone else) on top of tons of new medical bills.
But I'm here. And I'm 26!
And as long as I'm here I know God has something he wants me to do for him.
Some things I have been thinking about this morning:
Be thankful for every moment of every day, even the "bad ones"
Always tell people you love them
Don't be afraid to reach out to people, even if you haven't spoken to them in a long time
Know that ANYONE can change if they are willing - God is awesome like that
Say you're sorry when you are wrong, and don't worry about whether someone accepts it or not
Stop worrying about changing others - change yourself
And enjoy your birthday every year, because you were born for a reason and remain on this earth for a reason as well!
Thank you for reading about my life.
"When we trust our lives to the unseen but ever-present God, He will write our lives into His story and every last one of them will turn out to be a great read. With a grand ending" - Beth Moore
Saturday, January 31, 2009
Thursday, January 29, 2009
Alicia in Wonderland
(continued from "Testing, Testing, 1, 2, 3...")
Cheshire Cat: Oh, by the way, if you'd really like to know, he went that way.
Alice: Who did?
Cheshire Cat: The White Rabbit.
Alice: He did?
Cheshire Cat: He did what?
Alice: Went that way.
Cheshire Cat: Who did?
Alice: The White Rabbit.
Cheshire Cat: What rabbit?
Alice: But didn't you just say - I mean - Oh, dear.
Cheshire Cat: Can you stand on your head?
Alice: Oh!
The night before my surgery my parents and I met my Uncle Lee at McDonalds. My Uncle had flown in from Ohio and when we met up with him he was sitting at a table, typing on his laptop. I had never seen a laptop before, but it didn’t surprise me because I’ve always thought of him as a computer genius. At least that’s how my dad portrayed him. He created software and owned his own company. I didn’t see him much, no one in the family did, but we did sometimes talk on the phone. He loved to ask me how Roo was, Roo being my imaginary pet Kangaroo who lived behind the tree in front of my house. I would laugh – what kid doesn’t like an adult to take their imagination seriously? And I had quite an imagination.
We all went to the hospital to check in. It was December 21, 1994, and my surgery was scheduled for the next morning. My mother helped dress me in a hospital gown and robe and I walked around through the halls for a few minutes. I remember watching goldfish swim around in a tank. My last recollection before my surgery was sitting in my hospital bed, my Uncle Lee in a chair next to me. He and I were playing with the bed’s buttons, moving the feet up and down and whatnot. I faintly remember one more test in which they attached some electrodes to my head and body and then…
Caterpillar: Who... are... you?
Alice: Why, I hardly know, sir. I've changed so much since this morning, you see...
Caterpillar: No, I do not C, explain yourself.
Alice: I'm afraid I can't explain myself, you see, because I'm not myself, you know.
Caterpillar: I do not know.
Alice: I can't put it any more clearly, sir, because it isn't clear to me.
Darkness
I am awakened suddenly. The room is pitch black except a bright flashlight shining directly in my eyes. I can barely see the forms of two people leaning over me. “One pupil is larger than the other,” said a voice. Then someone asked, “Alicia, do you know where you are?” I had no idea.
Darkness
Next I woke up in a large glass tube. A nurse and my mother were standing above me. They had red paint smeared across their faces. I asked them, “Why are you wearing war paint?” They looked at each other and laughed in confusion. One asked, “What do you mean?” I said, “Like Indians!”, frustrated that they were laughing at me. They continued to look confused. “We’re not wearing war paint”.
Darkness
It was night time and I was outside a warehouse. There was a deep fog, but I could see a bright green light shining in the distance. It moved closer until I saw it was a lantern. An old man was carrying it, with a leash in his other hand. At the end of his leash I could barely make out a Rottweiler, because its fur was as dark as the sky. They walked past me, but didn’t give any indication that they saw me.
My eyes popped open and again a bright flashlight shown in my face. This time Dr. Fox was standing with the nurse. He smiled and asked, “Do you know who I am?” I said “Of course, you’re Dr. Fountain.” He and the nurse smiled at each other. I knew something was wrong.
Darkness
I woke up. There was no one around. No family. No doctors. No nurses. My bed was surrounded by curtains that were white with colored stripes. My little area was bright, as though the sun was somehow shining inside of it. A giant, fancy paper mobile came down from the ceiling. Like magic, a flap popped out that said “Dr. Stephen Fountain!”
Darkness
I woke up again. Everything was bright. Dr. Fox and Dr. Fountain were standing in front of my hospital bed. I was convinced that their stage names were Bing Crosby and Danny Kaye from the movie White Christmas. I asked them to perform a number for me, and they tap-danced to the “Sisters” song.
Darkness
This time when I woke up there were giant bouquets of flowers around me. I thought it was my funeral. A metal triangle descended from the ceiling. I looked over and saw a picture of the Virgin Mary with some writing I could not understand. I was terrified, knowing that I was about to be hung by this triangle.
Darkness
I woke up and I was only a pair of legs. I was the hooker, Kat, from Pretty Woman. Julia Roberts was at the nursing station in front of me, explaining to the nurse what had happened. I was horrified and thought, “How can I still be alive if I’m just a pair of legs?”
Darkness
I could hear the nurses around me, but I couldn’t see them. They were whispering behind the curtains, sitting behind computer screens at the nurse’s station, intentionally hiding their faces from me. They were plotting to kill me. One walked past me, carrying a giant painting of Elvis so that I could not see her. Another nurse jumped through the Elvis painting as a distraction. I was helpless and confused. A baby Ernie doll (from Sesame Street) was lowered down from the ceiling. I knew it was a trick.
Darkness
It was bright in my area again and this time my parents were there. A woman that my father had previously dated arrived and my parents were surprised to see her. After she left my mother began to cry, but not about anything related to this woman's visit. She was crying in pain because she had a horrible headache. She said she couldn't take it anymore, and she had to tell the truth. She pulled out her hair from underneath her shirt and it rolled down her back all the way to the floor and continued to roll along the floor for several feet. It was beautiful. We were all in shock that she had managed to keep this secret for so long. She confessed that when she was a child she was on her way to get her haircut. However, my Uncle Dallas loved her hair so much that he convinced her to tuck it down the back of her shirt so that no one would know how long it was and she wouldn't have to cut it. She had kept this secret for over 30 years, even though carrying the weight caused her incredible pain every day. She cried and my father hugged her. He assured her that everything was okay, and they went to get her hair cut.
Darkness
I woke up and my parents were dancing around, putting on a show for me. The curtain surrounding me unrolled, and as it unrolled out emerged the woman my father had previously dated. She was tucked into Angel wings, and as the curtain unrolled to reveal her as sort of a grand finale her wings opened.
More darkness and too many more strange hallucinations and half memories to mention in one blog.
Then finally, my first real memory following my operation.
Another flashlight in my face. The nurse removed the light and my eyes readjusted until I could see her more clearly. I asked "What day is it today?" She said "January 4th". Worried, I said "It's my mom's birthday! I need to get her a cake." The nurse called down to cafeteria and then ordered one slice of cake. There was an unlit candle on the top. The staff propped me up in a chair and then called my family from the waiting room. My mother walked in. In a meek voice I began to sing:
"Happy birthday to you...Happy birthday to you..." I barely finished the song before running out of breath.
My mother's eyes filled up with tears and she kissed me again and again on the forehead. Not wanting me to worry, she assured me over and over that she was crying "happy tears".
I'm crying a few at this moment, just thinking about it.
(to be continued)
Cheshire Cat: Oh, by the way, if you'd really like to know, he went that way.
Alice: Who did?
Cheshire Cat: The White Rabbit.
Alice: He did?
Cheshire Cat: He did what?
Alice: Went that way.
Cheshire Cat: Who did?
Alice: The White Rabbit.
Cheshire Cat: What rabbit?
Alice: But didn't you just say - I mean - Oh, dear.
Cheshire Cat: Can you stand on your head?
Alice: Oh!
The night before my surgery my parents and I met my Uncle Lee at McDonalds. My Uncle had flown in from Ohio and when we met up with him he was sitting at a table, typing on his laptop. I had never seen a laptop before, but it didn’t surprise me because I’ve always thought of him as a computer genius. At least that’s how my dad portrayed him. He created software and owned his own company. I didn’t see him much, no one in the family did, but we did sometimes talk on the phone. He loved to ask me how Roo was, Roo being my imaginary pet Kangaroo who lived behind the tree in front of my house. I would laugh – what kid doesn’t like an adult to take their imagination seriously? And I had quite an imagination.
We all went to the hospital to check in. It was December 21, 1994, and my surgery was scheduled for the next morning. My mother helped dress me in a hospital gown and robe and I walked around through the halls for a few minutes. I remember watching goldfish swim around in a tank. My last recollection before my surgery was sitting in my hospital bed, my Uncle Lee in a chair next to me. He and I were playing with the bed’s buttons, moving the feet up and down and whatnot. I faintly remember one more test in which they attached some electrodes to my head and body and then…
Caterpillar: Who... are... you?
Alice: Why, I hardly know, sir. I've changed so much since this morning, you see...
Caterpillar: No, I do not C, explain yourself.
Alice: I'm afraid I can't explain myself, you see, because I'm not myself, you know.
Caterpillar: I do not know.
Alice: I can't put it any more clearly, sir, because it isn't clear to me.
Darkness
I am awakened suddenly. The room is pitch black except a bright flashlight shining directly in my eyes. I can barely see the forms of two people leaning over me. “One pupil is larger than the other,” said a voice. Then someone asked, “Alicia, do you know where you are?” I had no idea.
Darkness
Next I woke up in a large glass tube. A nurse and my mother were standing above me. They had red paint smeared across their faces. I asked them, “Why are you wearing war paint?” They looked at each other and laughed in confusion. One asked, “What do you mean?” I said, “Like Indians!”, frustrated that they were laughing at me. They continued to look confused. “We’re not wearing war paint”.
Darkness
It was night time and I was outside a warehouse. There was a deep fog, but I could see a bright green light shining in the distance. It moved closer until I saw it was a lantern. An old man was carrying it, with a leash in his other hand. At the end of his leash I could barely make out a Rottweiler, because its fur was as dark as the sky. They walked past me, but didn’t give any indication that they saw me.
My eyes popped open and again a bright flashlight shown in my face. This time Dr. Fox was standing with the nurse. He smiled and asked, “Do you know who I am?” I said “Of course, you’re Dr. Fountain.” He and the nurse smiled at each other. I knew something was wrong.
Darkness
I woke up. There was no one around. No family. No doctors. No nurses. My bed was surrounded by curtains that were white with colored stripes. My little area was bright, as though the sun was somehow shining inside of it. A giant, fancy paper mobile came down from the ceiling. Like magic, a flap popped out that said “Dr. Stephen Fountain!”
Darkness
I woke up again. Everything was bright. Dr. Fox and Dr. Fountain were standing in front of my hospital bed. I was convinced that their stage names were Bing Crosby and Danny Kaye from the movie White Christmas. I asked them to perform a number for me, and they tap-danced to the “Sisters” song.
Darkness
This time when I woke up there were giant bouquets of flowers around me. I thought it was my funeral. A metal triangle descended from the ceiling. I looked over and saw a picture of the Virgin Mary with some writing I could not understand. I was terrified, knowing that I was about to be hung by this triangle.
Darkness
I woke up and I was only a pair of legs. I was the hooker, Kat, from Pretty Woman. Julia Roberts was at the nursing station in front of me, explaining to the nurse what had happened. I was horrified and thought, “How can I still be alive if I’m just a pair of legs?”
Darkness
I could hear the nurses around me, but I couldn’t see them. They were whispering behind the curtains, sitting behind computer screens at the nurse’s station, intentionally hiding their faces from me. They were plotting to kill me. One walked past me, carrying a giant painting of Elvis so that I could not see her. Another nurse jumped through the Elvis painting as a distraction. I was helpless and confused. A baby Ernie doll (from Sesame Street) was lowered down from the ceiling. I knew it was a trick.
Darkness
It was bright in my area again and this time my parents were there. A woman that my father had previously dated arrived and my parents were surprised to see her. After she left my mother began to cry, but not about anything related to this woman's visit. She was crying in pain because she had a horrible headache. She said she couldn't take it anymore, and she had to tell the truth. She pulled out her hair from underneath her shirt and it rolled down her back all the way to the floor and continued to roll along the floor for several feet. It was beautiful. We were all in shock that she had managed to keep this secret for so long. She confessed that when she was a child she was on her way to get her haircut. However, my Uncle Dallas loved her hair so much that he convinced her to tuck it down the back of her shirt so that no one would know how long it was and she wouldn't have to cut it. She had kept this secret for over 30 years, even though carrying the weight caused her incredible pain every day. She cried and my father hugged her. He assured her that everything was okay, and they went to get her hair cut.
Darkness
I woke up and my parents were dancing around, putting on a show for me. The curtain surrounding me unrolled, and as it unrolled out emerged the woman my father had previously dated. She was tucked into Angel wings, and as the curtain unrolled to reveal her as sort of a grand finale her wings opened.
More darkness and too many more strange hallucinations and half memories to mention in one blog.
Then finally, my first real memory following my operation.
Another flashlight in my face. The nurse removed the light and my eyes readjusted until I could see her more clearly. I asked "What day is it today?" She said "January 4th". Worried, I said "It's my mom's birthday! I need to get her a cake." The nurse called down to cafeteria and then ordered one slice of cake. There was an unlit candle on the top. The staff propped me up in a chair and then called my family from the waiting room. My mother walked in. In a meek voice I began to sing:
"Happy birthday to you...Happy birthday to you..." I barely finished the song before running out of breath.
My mother's eyes filled up with tears and she kissed me again and again on the forehead. Not wanting me to worry, she assured me over and over that she was crying "happy tears".
I'm crying a few at this moment, just thinking about it.
(to be continued)
Wednesday, January 28, 2009
Testing, Testing, 1, 2, 3...
(continued from "A Good Man")
I was in the 6th grade and my doctors were preparing us for the big surgery. It was moving so fast, there was no time for me to sort through my feelings. I have scattered memories of appointments, tests and then it was time.
My spinal fusion would actually be performed in two parts, one week from each other. Dr. Fountain said that I would be in the hospital approximately four to six weeks total. We joked about putting a small basketball hoop on my hospital room door to help pass the time.
I can only remember a few of the tests that preceded my operation. One of which was due to my lack of appetite. Today I am only 4ft2in tall and weigh around 71lbs. Back then I was virtually the same height, but weighed only 50lbs. I look at old pictures of myself from that period – always with a big smile, but frail looking. I was burning so much energy just to breath, and I never ate much at one setting. I still eat like that – “like a bird”. But there was some concern that maybe my stomach was abnormally small. So one test involved drinking the most disgusting liquid I had ever had. The consistency may have been like a milkshake, but this tasted like cement. And they wanted me, a person who still takes tiny sips of anything to drink an entire cup of this “barium” – Blah! It took forever. My mother sat in the hallway with me, encouraging me to keep drinking. Finally I drank enough to satisfy the technician and I laid down on the exam table. The room was dark except for a monitor that was mounted up in the air. On it I could see my digestive system at work. I thought it was pretty cool. Not a show worth drinking a cement milkshake for, though.
A few days prior to my surgery we went to the hospital for some more testing. They cut my arm with a small blade and then timed how long it took to clot. They took some blood and asked a lot of questions. Then we met Dr. Fox in the MSICU (Medical Surgical Intensive Care Unit). He explained that this would be where I would recover immediately following my surgery before moving upstairs to the pediatric ward. The MSICU only had two individual rooms. The rest of the area was open with curtains separating one bed from another. All of the patients were sleeping, the only noise from their "stalls" being the beeping and alarming of machines.
We talked for a few minutes, during which time my mom informed Dr. Fox about my allergy to tape. After my surgery when I was two I broke out with two huge rashes, one on each cheek, where they had taped my oxygen tubing. After hearing about this experience, Dr. Fox walked to a station in the MSICU and grabbed several rolls of tape; paper tape, plastic tape, a tape called Transpore, etc. He cut short strips off each roll and placed them on my arm. He instructed us to keep them on for a day or two and see which ones (if any) my skin would have a bad reaction to. A couple days later small rashes started to develop under all of them except the Transpore. To this day that is all I will let nurses use on me.
The only other thing I remember about the time right before my surgery was going to get my hair trimmed. I had long hair that reached all the way to my hips. My parents and I went to a lady's home to get our haircuts and I remember admiring this Christmas decoration she had. It was a little boy - I think an angel - playing a flute or something. She saw me admiring it and gave it to me. This visit felt like part of a strange ritual. I was preparing for ceremony in which I was the sacrifice.
Everyone's actions made me feel like an inmate on death row. Something horrible was about to happen to me that they couldn't stop. I couldn't stop it either, even if I asked nicely.
But I'm pretty sure I could have gotten anything else I wanted.
(to be continued)
I was in the 6th grade and my doctors were preparing us for the big surgery. It was moving so fast, there was no time for me to sort through my feelings. I have scattered memories of appointments, tests and then it was time.
My spinal fusion would actually be performed in two parts, one week from each other. Dr. Fountain said that I would be in the hospital approximately four to six weeks total. We joked about putting a small basketball hoop on my hospital room door to help pass the time.
I can only remember a few of the tests that preceded my operation. One of which was due to my lack of appetite. Today I am only 4ft2in tall and weigh around 71lbs. Back then I was virtually the same height, but weighed only 50lbs. I look at old pictures of myself from that period – always with a big smile, but frail looking. I was burning so much energy just to breath, and I never ate much at one setting. I still eat like that – “like a bird”. But there was some concern that maybe my stomach was abnormally small. So one test involved drinking the most disgusting liquid I had ever had. The consistency may have been like a milkshake, but this tasted like cement. And they wanted me, a person who still takes tiny sips of anything to drink an entire cup of this “barium” – Blah! It took forever. My mother sat in the hallway with me, encouraging me to keep drinking. Finally I drank enough to satisfy the technician and I laid down on the exam table. The room was dark except for a monitor that was mounted up in the air. On it I could see my digestive system at work. I thought it was pretty cool. Not a show worth drinking a cement milkshake for, though.
A few days prior to my surgery we went to the hospital for some more testing. They cut my arm with a small blade and then timed how long it took to clot. They took some blood and asked a lot of questions. Then we met Dr. Fox in the MSICU (Medical Surgical Intensive Care Unit). He explained that this would be where I would recover immediately following my surgery before moving upstairs to the pediatric ward. The MSICU only had two individual rooms. The rest of the area was open with curtains separating one bed from another. All of the patients were sleeping, the only noise from their "stalls" being the beeping and alarming of machines.
We talked for a few minutes, during which time my mom informed Dr. Fox about my allergy to tape. After my surgery when I was two I broke out with two huge rashes, one on each cheek, where they had taped my oxygen tubing. After hearing about this experience, Dr. Fox walked to a station in the MSICU and grabbed several rolls of tape; paper tape, plastic tape, a tape called Transpore, etc. He cut short strips off each roll and placed them on my arm. He instructed us to keep them on for a day or two and see which ones (if any) my skin would have a bad reaction to. A couple days later small rashes started to develop under all of them except the Transpore. To this day that is all I will let nurses use on me.
The only other thing I remember about the time right before my surgery was going to get my hair trimmed. I had long hair that reached all the way to my hips. My parents and I went to a lady's home to get our haircuts and I remember admiring this Christmas decoration she had. It was a little boy - I think an angel - playing a flute or something. She saw me admiring it and gave it to me. This visit felt like part of a strange ritual. I was preparing for ceremony in which I was the sacrifice.
Everyone's actions made me feel like an inmate on death row. Something horrible was about to happen to me that they couldn't stop. I couldn't stop it either, even if I asked nicely.
But I'm pretty sure I could have gotten anything else I wanted.
(to be continued)
Tuesday, January 27, 2009
A Good Man
(continued from "Numbers")
His first degree was in engineering. This is an important thing to know about him, because I believe it is what makes him more than a doctor. He is an inventor, a problem solver, a man who can inspire hope in people who have been told that all is lost; the definition of an "out-of-the-box" thinker; a warrior; a good man.
Dr. Richard Fox. We had never heard of him, but as I said before we trusted Dr. Fountain and Dr. Fountain had recommended we meet this Pediatric Pulmonologist. He impressed us during our first visit. After viewing my chest x-rays and my files, Dr. Fox gave us startling news – I did not have asthma. My previous pulmonologist had diagnosed me with asthma, and due to this diagnosis I was performing daily breathing exercises, taking some sort of pill, and puffing away on inhalers. The reality, which he shared with us, was that all of my asthma-like symptoms were a result of my spine literally crushing my lungs. We had been wasting energy, money and, most upsettingly, time. I was confused. My dad was angry. I’m not sure what my mom was feeling.
A spinal reconstruction was overdue and, because of that, the risks were increased. I was told that I could become paralyzed or even die. There was also a chance that, due to my breathing issues, I could need a tracheotomy.
I think my brain shut down. These potential consequences seemed imaginary to me. The surgery sounded imaginary. It was all too surreal. Looking back I have a jumble of memories. Time moves forwards and backwards without warning. For that reason I apologize if the next stories I tell (preceding my surgery) are out of order.
I do know it was around this time that my mom and dad’s fears took form in the question, “Alicia, is there anywhere in the United States that you would like to go?” My dad worked, and still works for United Airlines and in those pre-9/11 days we could fly for free. I had no answer for them. The reality of what they were really asking was too much for me. “Alicia, where do you want to go before you die?”
They suggested Disney World.
But we wouldn’t end up traveling anywhere. There simply wasn’t time.
(to be continued)
Articles about Dr. Fox
http://www.svcn.com/archives/lgwt/01.19.00/hospital-0003.html
http://www.svcn.com/archives/lgwt/20020821/lgnews1.shtml
My Favorite one
http://www.thewavemag.com/printarticle.php?articleid=25311
His first degree was in engineering. This is an important thing to know about him, because I believe it is what makes him more than a doctor. He is an inventor, a problem solver, a man who can inspire hope in people who have been told that all is lost; the definition of an "out-of-the-box" thinker; a warrior; a good man.
Dr. Richard Fox. We had never heard of him, but as I said before we trusted Dr. Fountain and Dr. Fountain had recommended we meet this Pediatric Pulmonologist. He impressed us during our first visit. After viewing my chest x-rays and my files, Dr. Fox gave us startling news – I did not have asthma. My previous pulmonologist had diagnosed me with asthma, and due to this diagnosis I was performing daily breathing exercises, taking some sort of pill, and puffing away on inhalers. The reality, which he shared with us, was that all of my asthma-like symptoms were a result of my spine literally crushing my lungs. We had been wasting energy, money and, most upsettingly, time. I was confused. My dad was angry. I’m not sure what my mom was feeling.
A spinal reconstruction was overdue and, because of that, the risks were increased. I was told that I could become paralyzed or even die. There was also a chance that, due to my breathing issues, I could need a tracheotomy.
I think my brain shut down. These potential consequences seemed imaginary to me. The surgery sounded imaginary. It was all too surreal. Looking back I have a jumble of memories. Time moves forwards and backwards without warning. For that reason I apologize if the next stories I tell (preceding my surgery) are out of order.
I do know it was around this time that my mom and dad’s fears took form in the question, “Alicia, is there anywhere in the United States that you would like to go?” My dad worked, and still works for United Airlines and in those pre-9/11 days we could fly for free. I had no answer for them. The reality of what they were really asking was too much for me. “Alicia, where do you want to go before you die?”
They suggested Disney World.
But we wouldn’t end up traveling anywhere. There simply wasn’t time.
(to be continued)
Articles about Dr. Fox
http://www.svcn.com/archives/lgwt/01.19.00/hospital-0003.html
http://www.svcn.com/archives/lgwt/20020821/lgnews1.shtml
My Favorite one
http://www.thewavemag.com/printarticle.php?articleid=25311
Monday, January 26, 2009
Numbers
(continued from "Infinite Chances")
For years my parents bought what I call "old clunkers". We'd buy a car that seemed to only cost a few hundred bucks and then it would stall a few hundred times before dying. Then we'd get a new one. At one point we had two trucks sitting in our driveway; one was orange and the other was blue. The back of the orange one rubbed against the tires, causing damage. The engine of the blue one simply didn't work. So my father switched the backs of the trucks, leaving us with an orange truck with a blue back and visa versa. One of the doors on the orange front didn't open and close properly so - you guessed it - we switched it for a blue one. We let the city take away the one with the blue front and kept the other. Although it wasn't the most reliable vehicle, I loved that crazy truck.
But like many families from the central valley, we had moved here from the bay area and were a family of commuters. My father worked in San Francisco every night and all my doctors were still in the San Jose area. Finally my parents decided to buy a real car.
My mother is a simple woman who doesn't ask for much. When she and my father discussed what to purchase she had only two stipulations - she wanted it to be a four-door vehicle and to have heating and air conditioning. She didn't care about brand or anything else. My father left for work one night, and the plan was for him to purchase a car the next day. That night while he was working my mother woke up suddenly with what she considered a horrible realization - she had forgotten to tell him not to buy a red car. To her driving a red car past a police officer was like waving a red flag in front of a bull - you're just asking to get hit with a charge. Now keep in mind that cell phones were not as affordable at this time, we certainly didn’t own one - she could not text him with "NO RED PLEASE". There was nothing she could do but wait. Dad pulled up the next day in a red Chevy Cavalier. My mom just laughed.
Shortly after, my mother and I made a trip to Stanford for a second opinion about the spinal reconstruction recommended by Dr. Fountain. This was a drive my mother was more than familiar with, having driven me there regularly as a baby. Our trip was interrupted by an approaching siren. My mother had failed to see a speed limit sign that was slightly covered by trees and “the red car curse” was resulting in her very first ticket. She was embarrassed, took the ticket, and we continued on our way.
(*note: I called my mother a few minutes ago to confirm that it was Stanford that we had gone to for the second opinion. She insisted that we also went to UC San Francisco, but since I have no recollection of this visit we are going to skip it for now)
This visit was dramatically different from the one with Dr. Fountain. Dr. Fountain’s office was small and intimate. His wife was the secretary. There were stacks of highlights magazines to keep me entertained. The other staff, the smells – everything felt familiar and safe. Stanford didn’t feel anything like this. My mother and I waited in a white sterile room. Before meeting with the doctor we met with another gentleman who asked a bunch of questions. He had me stand up and placed his hand around my upper neck, and pulled up my chin. He was polite – but who the heck was he?
The “real” doctor came in next. He was all smiles and began to rattle off a lot of numbers, “I’ve worked with this many people like you, performed this many surgeries, have this many diplomas.” Whatever. I remember thinking “that’s nice, but you’ve never met ME.” After a few minutes he had us schedule an appointment for an MRI. When my mother called to speak to the doctor about the results, she was “greeted” by a snooty secretary who said they were not in yet, but when they were the doctor “might send her a note.”
My mother could not believe the coldness, and the lack of urgency. Every other doctor’s actions were conveying that this was an urgent matter. My spine was putting dangerous pressure on my lungs. The chest pains that I was feeling when I breathed in were increasing. I sat in the school office during P.E. because I had turned blue in front of my teacher. And this doctor “might send her a note”?
A few days later Dr. Fountain personally called my parents. He asked how they were feeling and what they had decided. There were no more questions in my parent’s minds as to who should perform the surgery – only one doctor had treated me like an individual, not a number. We asked Dr. Fountain to perform the surgery. He accepted, and then made a referral to a pediatric pulmonologist named Dr. Fox.
Together these two men would try and save my life.
(to be continued)
For years my parents bought what I call "old clunkers". We'd buy a car that seemed to only cost a few hundred bucks and then it would stall a few hundred times before dying. Then we'd get a new one. At one point we had two trucks sitting in our driveway; one was orange and the other was blue. The back of the orange one rubbed against the tires, causing damage. The engine of the blue one simply didn't work. So my father switched the backs of the trucks, leaving us with an orange truck with a blue back and visa versa. One of the doors on the orange front didn't open and close properly so - you guessed it - we switched it for a blue one. We let the city take away the one with the blue front and kept the other. Although it wasn't the most reliable vehicle, I loved that crazy truck.
But like many families from the central valley, we had moved here from the bay area and were a family of commuters. My father worked in San Francisco every night and all my doctors were still in the San Jose area. Finally my parents decided to buy a real car.
My mother is a simple woman who doesn't ask for much. When she and my father discussed what to purchase she had only two stipulations - she wanted it to be a four-door vehicle and to have heating and air conditioning. She didn't care about brand or anything else. My father left for work one night, and the plan was for him to purchase a car the next day. That night while he was working my mother woke up suddenly with what she considered a horrible realization - she had forgotten to tell him not to buy a red car. To her driving a red car past a police officer was like waving a red flag in front of a bull - you're just asking to get hit with a charge. Now keep in mind that cell phones were not as affordable at this time, we certainly didn’t own one - she could not text him with "NO RED PLEASE". There was nothing she could do but wait. Dad pulled up the next day in a red Chevy Cavalier. My mom just laughed.
Shortly after, my mother and I made a trip to Stanford for a second opinion about the spinal reconstruction recommended by Dr. Fountain. This was a drive my mother was more than familiar with, having driven me there regularly as a baby. Our trip was interrupted by an approaching siren. My mother had failed to see a speed limit sign that was slightly covered by trees and “the red car curse” was resulting in her very first ticket. She was embarrassed, took the ticket, and we continued on our way.
(*note: I called my mother a few minutes ago to confirm that it was Stanford that we had gone to for the second opinion. She insisted that we also went to UC San Francisco, but since I have no recollection of this visit we are going to skip it for now)
This visit was dramatically different from the one with Dr. Fountain. Dr. Fountain’s office was small and intimate. His wife was the secretary. There were stacks of highlights magazines to keep me entertained. The other staff, the smells – everything felt familiar and safe. Stanford didn’t feel anything like this. My mother and I waited in a white sterile room. Before meeting with the doctor we met with another gentleman who asked a bunch of questions. He had me stand up and placed his hand around my upper neck, and pulled up my chin. He was polite – but who the heck was he?
The “real” doctor came in next. He was all smiles and began to rattle off a lot of numbers, “I’ve worked with this many people like you, performed this many surgeries, have this many diplomas.” Whatever. I remember thinking “that’s nice, but you’ve never met ME.” After a few minutes he had us schedule an appointment for an MRI. When my mother called to speak to the doctor about the results, she was “greeted” by a snooty secretary who said they were not in yet, but when they were the doctor “might send her a note.”
My mother could not believe the coldness, and the lack of urgency. Every other doctor’s actions were conveying that this was an urgent matter. My spine was putting dangerous pressure on my lungs. The chest pains that I was feeling when I breathed in were increasing. I sat in the school office during P.E. because I had turned blue in front of my teacher. And this doctor “might send her a note”?
A few days later Dr. Fountain personally called my parents. He asked how they were feeling and what they had decided. There were no more questions in my parent’s minds as to who should perform the surgery – only one doctor had treated me like an individual, not a number. We asked Dr. Fountain to perform the surgery. He accepted, and then made a referral to a pediatric pulmonologist named Dr. Fox.
Together these two men would try and save my life.
(to be continued)
Sunday, January 25, 2009
Infinite Chances
(continued from "The Observation that Changed Everything")
“Life gives you infinite chances”: A phrase from one of my favorite shows (mentioned several blogs ago) and something I have come to believe whole-heartedly. Life has a tendency to come full circle; at least that is what I have experienced on a number of occasions.
During a bi-annual visit to my Great Aunt and Uncle’s house my parents were alerted to significant changes in my condition (V.A.T.E.R. syndrome, specifically the scoliosis aspect) that had not been evident to them. However, these changes were very obvious to family members who hadn’t seen me in several months.
Oblivious to the weight of their concerns, we returned home and I returned to life as usual – but not for long. My mother scheduled an appointment with my back doctor and we went to see her. My parents could not understand how this had slipped by my multiple doctors. My doctor also seemed concerned, and I must apologize, but a lot of these memories are blurry to me because:
1. It was an information overload for a 10-11 year old child
2. These medical memories are intertwined with memories of playing with friends, “crushing” on boys, doing homework, moving twice, and other normal stuff
I do not know why, but although this woman was my regular back doctor, we were referred to a specialist for council. The first doctor we would consult was named Dr. Fountain. Dr. Fountain had performed spinal surgery on me when I was two years old. At that time he removed a piece of my tailbone and placed it against my spine, holding the spine upright. I had several body braces and body casts during the first few years of my life. So when my parents told me about Dr. Fountain and our visit, I think we all assumed it was time for another brace to straighten me out.
I remember how sure I felt that I was going to be getting another brace. I was a little resistant – puberty would be hard enough without feeling like a turtle (*singing “Hero’s in a half-shell – turtle power!) – But not overly so. We sat down in the office – my mother, father and me. My father being there should’ve been my first hint that this wasn’t going to be a good visit. My dad worked night-shift and rarely accompanied us to things like doctor appointments. After reviewing my x-rays, Dr. Fountain gave us the surprising news. My spine had started rotating around the bony barrier he had created when I was two, and no body brace could reverse its effect. I would need to have another surgery.
I was in shock. My mom started crying. I don’t remember actually feeling anything until she started crying. I was like a baby who falls over and bumps its head, then looks up to its mother’s face for directions as to how to react. She was scared, so I felt scared. She was crying, so I started crying. We were escorted into another room while my father spoke to Dr. Fountain alone. “Man-to-man” I guess.
My parents trusted Dr. Fountain. They loved him, especially how quickly he and I bonded when I was a toddler. But it was a big decision, and my parents still wanted a second opinion. Our next visit would be somewhere that was very familiar to them…
(to be continued)
“Life gives you infinite chances”: A phrase from one of my favorite shows (mentioned several blogs ago) and something I have come to believe whole-heartedly. Life has a tendency to come full circle; at least that is what I have experienced on a number of occasions.
During a bi-annual visit to my Great Aunt and Uncle’s house my parents were alerted to significant changes in my condition (V.A.T.E.R. syndrome, specifically the scoliosis aspect) that had not been evident to them. However, these changes were very obvious to family members who hadn’t seen me in several months.
Oblivious to the weight of their concerns, we returned home and I returned to life as usual – but not for long. My mother scheduled an appointment with my back doctor and we went to see her. My parents could not understand how this had slipped by my multiple doctors. My doctor also seemed concerned, and I must apologize, but a lot of these memories are blurry to me because:
1. It was an information overload for a 10-11 year old child
2. These medical memories are intertwined with memories of playing with friends, “crushing” on boys, doing homework, moving twice, and other normal stuff
I do not know why, but although this woman was my regular back doctor, we were referred to a specialist for council. The first doctor we would consult was named Dr. Fountain. Dr. Fountain had performed spinal surgery on me when I was two years old. At that time he removed a piece of my tailbone and placed it against my spine, holding the spine upright. I had several body braces and body casts during the first few years of my life. So when my parents told me about Dr. Fountain and our visit, I think we all assumed it was time for another brace to straighten me out.
I remember how sure I felt that I was going to be getting another brace. I was a little resistant – puberty would be hard enough without feeling like a turtle (*singing “Hero’s in a half-shell – turtle power!) – But not overly so. We sat down in the office – my mother, father and me. My father being there should’ve been my first hint that this wasn’t going to be a good visit. My dad worked night-shift and rarely accompanied us to things like doctor appointments. After reviewing my x-rays, Dr. Fountain gave us the surprising news. My spine had started rotating around the bony barrier he had created when I was two, and no body brace could reverse its effect. I would need to have another surgery.
I was in shock. My mom started crying. I don’t remember actually feeling anything until she started crying. I was like a baby who falls over and bumps its head, then looks up to its mother’s face for directions as to how to react. She was scared, so I felt scared. She was crying, so I started crying. We were escorted into another room while my father spoke to Dr. Fountain alone. “Man-to-man” I guess.
My parents trusted Dr. Fountain. They loved him, especially how quickly he and I bonded when I was a toddler. But it was a big decision, and my parents still wanted a second opinion. Our next visit would be somewhere that was very familiar to them…
(to be continued)
Thursday, January 22, 2009
The Observation that Changed Everything
(continued from "Warning Signs")
There is an interesting phenomenon that takes place in life. Often people who see you every day are too close to notice small, incremental changes in you. This happens a lot with people who are losing weight. Their closest family members do not always notice the loss, except maybe once there are other physical signs like pants falling off or shirts appearing baggy. But to people who only see you from time to time the change can be more apparent. This was the case with my Great Aunt Ruth and Uncle Dick, who we visited only twice per year.
During the summer of ’92 or ’93 – I can’t quite remember which – we were up visiting them in Weaverville, CA. No one celebrates the 4th of July like they do in Weaverville! Pancake breakfast that the whole town attends, an anvil firing (you’d just have to see it), small-town parade w/ ice cream social, fairgrounds with only a few games (my favorite being the dime toss!), fireman’s muster and more. We arrived, ready to celebrate. Somewhere during the week of festivities my Great Aunt and Uncle would ask my parents,
“What’s going on with Alicia?”
At the time I had so many doctors. I had a lung doctor who had diagnosed me with asthma, a doctor for my allergies, a foot doctor for my club foot and other physical therapy needs, a heart doctor for my heart murmur, and a back doctor for my scoliosis. My doctors were all in the bay area, so my mother would schedule multiple visits on one day to avoid frequent commuting and to ensure that I didn’t miss too many days of school. But all of these doctors in all of the visits failed to notice a very obvious and dramatic change in my body. During my last growth spurt (and I use that term loosely, because I still stand at only 4ft2in) my spine had twisted to a life-threatening 85 degrees.
My family’s simple observation would set in motion some of the most influential events of my life. Of course I had been feeling my body’s changes for some time. At this point I would feel a sharp pain every time I took in a breath. I could no longer ride my bike without feeling extremely winded. I limited my running. But this, like the chest pains mentioned in my last blog, had become normal to me.
I was too busy being a kid to worry about random aches and pains.
(to be continued)
There is an interesting phenomenon that takes place in life. Often people who see you every day are too close to notice small, incremental changes in you. This happens a lot with people who are losing weight. Their closest family members do not always notice the loss, except maybe once there are other physical signs like pants falling off or shirts appearing baggy. But to people who only see you from time to time the change can be more apparent. This was the case with my Great Aunt Ruth and Uncle Dick, who we visited only twice per year.
During the summer of ’92 or ’93 – I can’t quite remember which – we were up visiting them in Weaverville, CA. No one celebrates the 4th of July like they do in Weaverville! Pancake breakfast that the whole town attends, an anvil firing (you’d just have to see it), small-town parade w/ ice cream social, fairgrounds with only a few games (my favorite being the dime toss!), fireman’s muster and more. We arrived, ready to celebrate. Somewhere during the week of festivities my Great Aunt and Uncle would ask my parents,
“What’s going on with Alicia?”
At the time I had so many doctors. I had a lung doctor who had diagnosed me with asthma, a doctor for my allergies, a foot doctor for my club foot and other physical therapy needs, a heart doctor for my heart murmur, and a back doctor for my scoliosis. My doctors were all in the bay area, so my mother would schedule multiple visits on one day to avoid frequent commuting and to ensure that I didn’t miss too many days of school. But all of these doctors in all of the visits failed to notice a very obvious and dramatic change in my body. During my last growth spurt (and I use that term loosely, because I still stand at only 4ft2in) my spine had twisted to a life-threatening 85 degrees.
My family’s simple observation would set in motion some of the most influential events of my life. Of course I had been feeling my body’s changes for some time. At this point I would feel a sharp pain every time I took in a breath. I could no longer ride my bike without feeling extremely winded. I limited my running. But this, like the chest pains mentioned in my last blog, had become normal to me.
I was too busy being a kid to worry about random aches and pains.
(to be continued)
Wednesday, January 21, 2009
Warning Signs
One afternoon when I was in the fourth grade I was playing at recess when our first bell rang. I had been playing alone, and was on the other side of the blacktop from my classroom. I started running toward my classroom, knowing I probably wouldn't make it before the second bell rang, meaning it'd be tardy.
As I was running and worrying about what my teacher would say, I got what I can only describe as a feeling that part of my lung had somehow gotten stuck inbetween two of my ribs. It was a sharp, deep pinching feeling, that I had started getting quite frequently. I did the only thing that I knew would make it go away. I stopped, kneeled over a bit, squeezed where the pain was coming from, and screamed as loud as I could.
The squeezing tightened and tightened until it was almost unbareable and then POP. It was gone. I don't know why I didn't tell anyone what I had been experiencing. It had become somewhat normal to me, I'd forget about the sensation as soon as it passed. I would later find out that my body was trying to tell me something very important. But what did I care?
I just didn't want to be late to class.
(to be continued)
As I was running and worrying about what my teacher would say, I got what I can only describe as a feeling that part of my lung had somehow gotten stuck inbetween two of my ribs. It was a sharp, deep pinching feeling, that I had started getting quite frequently. I did the only thing that I knew would make it go away. I stopped, kneeled over a bit, squeezed where the pain was coming from, and screamed as loud as I could.
The squeezing tightened and tightened until it was almost unbareable and then POP. It was gone. I don't know why I didn't tell anyone what I had been experiencing. It had become somewhat normal to me, I'd forget about the sensation as soon as it passed. I would later find out that my body was trying to tell me something very important. But what did I care?
I just didn't want to be late to class.
(to be continued)
It Shouldn't Be Like This
Recently some of the women of my church started a new Bible study by Beth Moore about the book of Esther. We discuss what we read during the week and then watch a video segment of Beth speaking. Last Monday, Beth shared briefly about the great depression, specifically the effect that the stock market crash had on her grandmother. She describes her grandmother’s feeling of loss and anger and (what really stuck out to me) overall mind-set of, “It shouldn’t be like this."
You can’t help but hear people talking about our current economic situation – unemployment rates, foreclosures, etc – so many, even within our own community, are hurting in these ways. Beth explains that loss can leave us with a feeling of entitlement, which again leads to that mindset of ,“It shouldn’t be like this." Last September my husband and I had four jobs between us and had just purchased our first home. A couple weeks later I became sick with pneumonia resulting in a two-month hospital stay. I have since been laid off from both of my jobs due to the economy. My husband had to change from two jobs with unpredictable hours to one with set hours in order to support our family. Do not misunderstand – we are still in a much better situation than many others, and MUST remember to be thankful. However, I still struggle with our significant (and what seems so sudden) change in financial stability; the metaphorical rug that was pulled out from underneath our fragile expectations. And as the bills come in and I sort through questions about my ability to return to work and decisions about government assistance and hope that my husband will return to school and so on... I sometimes look at my life and say “It shouldn’t be like this.” “We were being so careful.” “We were working so hard.” “We had so many plans.”
I am not alone in these feelings, but I try not to entertain them for too long. Maybe it shouldn’t be like this, but it is. Obviously I never had ownership of my destiny; so if “It shouldn’t be like this” then God, show me how it should be! I will hope in the future that God has in store for us. He has promised that he will give me all I need, and the truth is I am finding more and more that I do not need very much. The Bible calls us to mourn with those who mourn – and people are definitely experiencing loss. So comfort each other. But we can also re-examine our expectations and compare them with God’s promises (which I am disappointed do not necessarily include the LCD screen TV I was admiring over the weekend). This is a scary time, but it can also be an exciting time. It is how it is – so now what? Thanks to God that we have a community where we can live out the answer to that question together and do not have to be alone.
You can’t help but hear people talking about our current economic situation – unemployment rates, foreclosures, etc – so many, even within our own community, are hurting in these ways. Beth explains that loss can leave us with a feeling of entitlement, which again leads to that mindset of ,“It shouldn’t be like this." Last September my husband and I had four jobs between us and had just purchased our first home. A couple weeks later I became sick with pneumonia resulting in a two-month hospital stay. I have since been laid off from both of my jobs due to the economy. My husband had to change from two jobs with unpredictable hours to one with set hours in order to support our family. Do not misunderstand – we are still in a much better situation than many others, and MUST remember to be thankful. However, I still struggle with our significant (and what seems so sudden) change in financial stability; the metaphorical rug that was pulled out from underneath our fragile expectations. And as the bills come in and I sort through questions about my ability to return to work and decisions about government assistance and hope that my husband will return to school and so on... I sometimes look at my life and say “It shouldn’t be like this.” “We were being so careful.” “We were working so hard.” “We had so many plans.”
I am not alone in these feelings, but I try not to entertain them for too long. Maybe it shouldn’t be like this, but it is. Obviously I never had ownership of my destiny; so if “It shouldn’t be like this” then God, show me how it should be! I will hope in the future that God has in store for us. He has promised that he will give me all I need, and the truth is I am finding more and more that I do not need very much. The Bible calls us to mourn with those who mourn – and people are definitely experiencing loss. So comfort each other. But we can also re-examine our expectations and compare them with God’s promises (which I am disappointed do not necessarily include the LCD screen TV I was admiring over the weekend). This is a scary time, but it can also be an exciting time. It is how it is – so now what? Thanks to God that we have a community where we can live out the answer to that question together and do not have to be alone.
Tuesday, January 13, 2009
Your Story Will Heal You
I used to watch a show every day called “Starting Over”. There were two “Life Coaches” on the show, one named Iyanla. One thing she would tell every woman she worked one-on-one with was, “Your story will heal you.” She often had the ladies write down their life story and read it aloud to her. As they read, she would challenge their versions of history, pointing out misconceptions, assumptions, and point out road blocks to growth. Through this process I would see great change in their attitudes and overall beings. Particularly when we are children we have such a skewed perception of reality – I think it can help anyone to re-evaluate the circumstances of their lives and most people I believe would walk away with a new understanding of at least one event or person, etc.
Already as I talk to family members about writing this book about my life, they are offering new information that is changing how I feel about them as people. I would even say that they are becoming “people” more and more to me, and not just “my mom” or “my dad” or “my aunt” or “my uncle”.
I look forward to reconnecting with family members, and I’m excited that this project is encouraging exactly that.
Already as I talk to family members about writing this book about my life, they are offering new information that is changing how I feel about them as people. I would even say that they are becoming “people” more and more to me, and not just “my mom” or “my dad” or “my aunt” or “my uncle”.
I look forward to reconnecting with family members, and I’m excited that this project is encouraging exactly that.
Thursday, January 8, 2009
Do I Really Want to be a Writer?
If I really want to be a writer, I need to take the advice I'm always forcing on my also want-to-be writer husband - I need to dedicate a few hours every day to sitting down and writing, whether I feel like it or not.
Since my last blog I've worked a lot on my new goal of writing a book by doing anything but writing. I've been reading a book about writing sermons, looking through old albums of me growing up with various braces and doctor visits, and even dug up a couple videos of the three months I spent in the hospital in the 6th grade. Now I'm begging my family for a scanner with an automatic feeder for my birthday (it's coming soon!) and planning to convert my videos to data DVD so that I can upload them on this site.
Looking through those pictures and videos brings back all kinds of memories, and I think they will be important tools for helping me to tell my story. Maybe that's the photograper in me speaking.
Anyone who knows me for more than five minutes eventually hears a story or 100 about the three months that I spent in the hospital when I was in the 6th grade, and the events surrounding that experience. It was obviously a life-altering time, because so many of my random thoughts and fears take me back to it. And as a result I will talk about my time there for as long as anyone will listen. It’s funny that, as much as I bring these stories up, I don’t remember writing much about them. Maybe an entry or two in one of my journals – but nothing to represent the substantial effect this time had on me. I'm much more likely to share photographs and my videos with someone. It's faster and easier and never requires me to tap deep into my real feelings.
So with my recent hospital stay, two months spanning from last October until December, how could these old memories be far from my current thoughts? There are so many parallels and so many differences that have bubbled up to the surface and screamed in my face "DEAL WITH ME NOW". Even my second to last day I was forced to deal with these feelings when it became time for my nurse to pull out my PICC line. I had made the mistake a couple days prior of asking "How long is the PICC line, anyway?" The nurse formed the length with her hands, spanning over a foot. A PICC line, in case you don't know, goes from the entry point (which was near my elbow) all the way to your heart, so that the staff can draw blood directly without poking the patient with a needle every time. Mine was inserted while I was unconscious, and as I started to panic about its removal (and proceeded to panic for two days) I was assured time and time again that it wasn't going to hurt. The tube was "floating in my vein" - a comment that did not help reassure me AT ALL. I had become okay with regular blood draws and even stopped putting up a fight about taking blood gases (when they draw blood directly from your artery; my last several draws required 3 to 5 deep attemps). But this PICC line was unfamiliar territory, and sounded insane.
Any conversations about the matter transformed me instantly into that terrified 12 year old girl, who was never warned that 4 to 6 weeks in the hospital could and would turn into three months of blood draws, learning how to walk again, body braces, leg braces, neck braces, an iron lung, a collapsed lung, a tracheotomy, a G-tube and many more rapid changes. They seemed like bullets, zooming past my head as I attempted to duck and dodge, but hit every time.
So here I was, 25 years old but frightened to a point that confused and frustrated my nurse who fully understood the reality of the situation – pulling out this “floating” line was not going to hurt. But all I could think, as I cowered into my chair, was “How could it not hurt?” and “Where is my mommy or Adam? Couldn’t they wait until someone was here to hold my hand?”
Finally I handed over my arm, and clutched onto my loyal companion, Lambert (a stuffed lamb I have had since I was three). She had been right; the only part that hurt was removing all the tape and cleaning where the stitches had held the line in place. It was out before I knew it – and I was 25 again.
I apologized for my behavior, and explained to her that when she was talking to me she was talking to a 12 year old, not the rational 25 year old she expected. She misunderstood me and told another one of my nurses that I told her she had talked down to me. I tried to clear that up later, but I don’t think she understood or believed me. But I guess irrational fears don’t translate well to those who haven’t had similar life experiences.
I often have to fight to be a grown up. It’s so easy to revert in fear and allow others to take control. One of my hospital chaplains, Roger, said that it’s natural when you’re going through a challenging time to suddenly be dealing with feelings from years past. I grew up a lot during this last hospital stay, but obviously I have a lot more to go. Thankfully, God and others are patient with me and nudge me along, so there is hope for me yet.
Thank you for reading.
Question: How do you deal with fear?
Since my last blog I've worked a lot on my new goal of writing a book by doing anything but writing. I've been reading a book about writing sermons, looking through old albums of me growing up with various braces and doctor visits, and even dug up a couple videos of the three months I spent in the hospital in the 6th grade. Now I'm begging my family for a scanner with an automatic feeder for my birthday (it's coming soon!) and planning to convert my videos to data DVD so that I can upload them on this site.
Looking through those pictures and videos brings back all kinds of memories, and I think they will be important tools for helping me to tell my story. Maybe that's the photograper in me speaking.
Anyone who knows me for more than five minutes eventually hears a story or 100 about the three months that I spent in the hospital when I was in the 6th grade, and the events surrounding that experience. It was obviously a life-altering time, because so many of my random thoughts and fears take me back to it. And as a result I will talk about my time there for as long as anyone will listen. It’s funny that, as much as I bring these stories up, I don’t remember writing much about them. Maybe an entry or two in one of my journals – but nothing to represent the substantial effect this time had on me. I'm much more likely to share photographs and my videos with someone. It's faster and easier and never requires me to tap deep into my real feelings.
So with my recent hospital stay, two months spanning from last October until December, how could these old memories be far from my current thoughts? There are so many parallels and so many differences that have bubbled up to the surface and screamed in my face "DEAL WITH ME NOW". Even my second to last day I was forced to deal with these feelings when it became time for my nurse to pull out my PICC line. I had made the mistake a couple days prior of asking "How long is the PICC line, anyway?" The nurse formed the length with her hands, spanning over a foot. A PICC line, in case you don't know, goes from the entry point (which was near my elbow) all the way to your heart, so that the staff can draw blood directly without poking the patient with a needle every time. Mine was inserted while I was unconscious, and as I started to panic about its removal (and proceeded to panic for two days) I was assured time and time again that it wasn't going to hurt. The tube was "floating in my vein" - a comment that did not help reassure me AT ALL. I had become okay with regular blood draws and even stopped putting up a fight about taking blood gases (when they draw blood directly from your artery; my last several draws required 3 to 5 deep attemps). But this PICC line was unfamiliar territory, and sounded insane.
Any conversations about the matter transformed me instantly into that terrified 12 year old girl, who was never warned that 4 to 6 weeks in the hospital could and would turn into three months of blood draws, learning how to walk again, body braces, leg braces, neck braces, an iron lung, a collapsed lung, a tracheotomy, a G-tube and many more rapid changes. They seemed like bullets, zooming past my head as I attempted to duck and dodge, but hit every time.
So here I was, 25 years old but frightened to a point that confused and frustrated my nurse who fully understood the reality of the situation – pulling out this “floating” line was not going to hurt. But all I could think, as I cowered into my chair, was “How could it not hurt?” and “Where is my mommy or Adam? Couldn’t they wait until someone was here to hold my hand?”
Finally I handed over my arm, and clutched onto my loyal companion, Lambert (a stuffed lamb I have had since I was three). She had been right; the only part that hurt was removing all the tape and cleaning where the stitches had held the line in place. It was out before I knew it – and I was 25 again.
I apologized for my behavior, and explained to her that when she was talking to me she was talking to a 12 year old, not the rational 25 year old she expected. She misunderstood me and told another one of my nurses that I told her she had talked down to me. I tried to clear that up later, but I don’t think she understood or believed me. But I guess irrational fears don’t translate well to those who haven’t had similar life experiences.
I often have to fight to be a grown up. It’s so easy to revert in fear and allow others to take control. One of my hospital chaplains, Roger, said that it’s natural when you’re going through a challenging time to suddenly be dealing with feelings from years past. I grew up a lot during this last hospital stay, but obviously I have a lot more to go. Thankfully, God and others are patient with me and nudge me along, so there is hope for me yet.
Thank you for reading.
Question: How do you deal with fear?
Friday, January 2, 2009
Hope That is Unseen
" 22We know that the whole creation has been groaning as in the pains of childbirth right up to the present time. 23Not only so, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for our adoption as sons, the redemption of our bodies. 24For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what he already has? 25But if we hope for what we do not yet have, we wait for it patiently.
26In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. 27And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God's will."
Hope That is Unseen
The scriptures above are from Romans 8, a chapter that Pastor Jerry Yates shared with me while I was in the hospital. It became one of my favorite chapters of the Bible - I read it to anyone who is willing to listen. Even though I know the book of Romans is a letter, I still picture Paul speaking the words as though he is reciting one of Shakespeare's Soliloquies. The verses that stood out to me the most were 24 and 25. I felt very convicted because I was worrying constantly, not trusting that God was working in my favor while I was sitting in my hospital bed. So I put those verses up on the board in my room and everytime I felt anxiety I'd look them over and they would bring me some comfort. I'm not going to lie and say I felt instantly at ease, but I did pray that I would have faith in what I could not see, and have trust in God.
Since I have returned home from the hospital I have seen many ways that God had been working in my favor. First, while at a Christmas dinner with my friends Karissa and James and family, James' Mother informed me that after reading the article published about me in the Stockton Record she had become so outraged that she wrote my insurance company an angry letter and also wrote St. Joseph's a letter thanking them for the way they were assisting me with returning home. She told several other people to do the same.
I spent the last couple of days sorting through boxes and boxes of paperwork. I was amazed at all of the cards that people sent me - especially the cards from extended family members or even friends of friends that I don't know too well. I feel so blessed that people took the time to write down some thoughts and send them my way - prayers and best wishes from around the country. It reminded me of another extended hospital stay in which people from all around sent me letters and cards. These last few days have been sort of painful, it's a weird feeling to open these cards. But it's a good hurt. I don't really know how to explain it. But thank you everyone.
Today I was walking into Target to buy some storage for all the paperwork I mentioned above. My mom dropped me off at the front and then went to park the care. As I entered a stranger said "Hey, you got out of the hospital". The young woman explained that her Aunt had been in the hospital recently, and she remembered seeing me. She appeared so pleased to see me out and about - I felt a little celebrity status! lol. I asked how her Aunt was - she had been moved to a care home but is doing better. We wished each other well and went about our shopping.
My Aunt Maxine from Idaho, who I rarely speak to, called me yesterday. She, also, was very pleased that I am home, and she wanted to share something with me. Apparently she had been regularly updating a co-worker about my situation, and had shared my article with her. My Aunt wanted me to know this woman was excited that I was home and had been diligently praying for me and also thought of me as an extraordinary person. I didn't know how to take the information, it was very moving, and compliments are always hard. So I just told her to tell her co-worker "thank you" and joked about the fact that I am writing a book.
These are only a few ways I have seen that God was working in my favor. It is very humbling, because I was far from the brave Christian while in the hospital - and definitely not my first few days home. But I did feel strengthened from those scriptures, and I hope you find something from them as well.
I think in the beginning of my book, where people sometimes put quotes, I will put the chorus to a song I hope to someday sing faithfully.
"Jesus, Jesus, how I trust Him
How I've proved Him O'er and O'er
Jesus, Jesus, precious Jesus
Oh, for grace to trust Him more."
Goodnight, and thanks for reading. God Bless.
26In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. 27And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God's will."
Hope That is Unseen
The scriptures above are from Romans 8, a chapter that Pastor Jerry Yates shared with me while I was in the hospital. It became one of my favorite chapters of the Bible - I read it to anyone who is willing to listen. Even though I know the book of Romans is a letter, I still picture Paul speaking the words as though he is reciting one of Shakespeare's Soliloquies. The verses that stood out to me the most were 24 and 25. I felt very convicted because I was worrying constantly, not trusting that God was working in my favor while I was sitting in my hospital bed. So I put those verses up on the board in my room and everytime I felt anxiety I'd look them over and they would bring me some comfort. I'm not going to lie and say I felt instantly at ease, but I did pray that I would have faith in what I could not see, and have trust in God.
Since I have returned home from the hospital I have seen many ways that God had been working in my favor. First, while at a Christmas dinner with my friends Karissa and James and family, James' Mother informed me that after reading the article published about me in the Stockton Record she had become so outraged that she wrote my insurance company an angry letter and also wrote St. Joseph's a letter thanking them for the way they were assisting me with returning home. She told several other people to do the same.
I spent the last couple of days sorting through boxes and boxes of paperwork. I was amazed at all of the cards that people sent me - especially the cards from extended family members or even friends of friends that I don't know too well. I feel so blessed that people took the time to write down some thoughts and send them my way - prayers and best wishes from around the country. It reminded me of another extended hospital stay in which people from all around sent me letters and cards. These last few days have been sort of painful, it's a weird feeling to open these cards. But it's a good hurt. I don't really know how to explain it. But thank you everyone.
Today I was walking into Target to buy some storage for all the paperwork I mentioned above. My mom dropped me off at the front and then went to park the care. As I entered a stranger said "Hey, you got out of the hospital". The young woman explained that her Aunt had been in the hospital recently, and she remembered seeing me. She appeared so pleased to see me out and about - I felt a little celebrity status! lol. I asked how her Aunt was - she had been moved to a care home but is doing better. We wished each other well and went about our shopping.
My Aunt Maxine from Idaho, who I rarely speak to, called me yesterday. She, also, was very pleased that I am home, and she wanted to share something with me. Apparently she had been regularly updating a co-worker about my situation, and had shared my article with her. My Aunt wanted me to know this woman was excited that I was home and had been diligently praying for me and also thought of me as an extraordinary person. I didn't know how to take the information, it was very moving, and compliments are always hard. So I just told her to tell her co-worker "thank you" and joked about the fact that I am writing a book.
These are only a few ways I have seen that God was working in my favor. It is very humbling, because I was far from the brave Christian while in the hospital - and definitely not my first few days home. But I did feel strengthened from those scriptures, and I hope you find something from them as well.
I think in the beginning of my book, where people sometimes put quotes, I will put the chorus to a song I hope to someday sing faithfully.
"Jesus, Jesus, how I trust Him
How I've proved Him O'er and O'er
Jesus, Jesus, precious Jesus
Oh, for grace to trust Him more."
Goodnight, and thanks for reading. God Bless.
Thursday, January 1, 2009
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