Five years. If I think about it too much, that number seems ridiculous Say any word over and over again and you will know what I mean. Just like whatever world I have now ruined for you, five years seems to be a simple enough concept at first. It's just a way to mark the passage of time - how many circuits the earth has made around the sun. So simple. Until you start thinking that a year is made up of roughly 12 months, 52 weeks, 365 days, or 525,600 minutes. And as the musical RENT would have us know, each one of those slightly more complex measurements of time are full of little pieces of our lives. Pieces of hope and heartbreak, love and loneliness triumph and failure. These last five years my life has changed so completely not once, but over and over again. If I try to think about it all at once, it just seems strange.
So I won't look at it all at once. I'll scroll forwards and backwards and pick out the highlights. I start with an evening five years ago when I started feeling cold, dizzy and tired. Not to worry. It was nothing a good night's sleep wouldn't fix. Except the next day it was worse. Fast forward. Now I'm at the hospital and the doctor is telling me I drank too much last night. She says I'm dehydrated and suffering from a hangover. I ask her what kind of hangover happens after I drank no alcohol and that makes my left side week. She is annoyed. She discharges me. Fast forward. I'm back at my condo and drift to sleep as I wait for my mom to drive the three and a half hours to come rescue me. I dream that I talk to God and she tells me not to worry because my work isn't done yet. I need to help her children. I wake up confused because I'm not religious, but perhaps a little comforted anyway. Fast forward. I'm at a neurologists appointment and I'm starting to believe I had a stroke. Mom is crying and I am scared. Fast forward. An angel of campus health tells me he thinks he knows what is wrong. Another girl like me had strokes because of a hole in her heart and I should be tested. Fast forward. I'm laying down on a table next to an ultrasound machine. It's a Sequoia made my Acuson. My dad made this machine. The ultrasound tech tells me in a moment I will perform a valsalva maneuver and we will see if the saline bubbles injected into my arm will show a hole in my heart. We already see how my heart is pounding. I'm nervous, no I'm scared. I'm terrified that it won't show anything and I'll just keep having strokes until I die. But here we go, I push down and fix my eyes on the screen and see a flurry of bubbles pass through the hole that was supposed to have closed at birth. My eyes tear up, because now I know why. Fast forward. I say good bye to my friends at school. I close the club I had worked months to create. I am going home for heart surgery. Fast forward. No, I cannot have the heart surgery because not enough strokes show up on the MRI. I can take aspirin. Or I can join a study where I will have heart surgery with only a 50/50 chance of actually getting the hole closed. Fast forward. I'm watching friends with my brother and something feels off. It's his bedtime so I go upstairs and sit on my parents bedroom chair. Things make less and less sense. My mom asks if she should call 911. I say yes. I feel my dad's hands in mine and he tells me to keep squeezing them. I do, because if I keep squeezing them, everything will be ok. I have no memories after that for a while. They tell me I yelled at the ER doctor when he tried to send me home the first time. Fast forward. I'm home from the hospital and I'm shaking in bed. I'm afraid if I go to sleep, I won't wake up. Mom stays in my room with me and promises she will make sure I'm ok. Fast forward. It's almost Halloween and I'm at the cardiologist. He says to hell with the FDA, he is going to close the hole in my heart the very next day. I ask if he can wait until after the weekend because I want to celebrate halloween. He says it can't wait. Fast forward. I wear a cute outfit and am all smiles as I go to pre-op. I am excited to get this ove with. I am excited to wake up from surgery and feel safe again. Fast forward. Oops, I wake up during surgery and try to steal a look at the screens that show the operation. I feel something fluttering in my chest where they are working. I'm fascinated but then they give me more medication. Fast forward. I'm upstairs in a hospital room and my leg won't stop bleeding. My blood pressure plumets and the nurses flood my room. I'm fine and don't know what all the fuss is about. My leg stops bleeding and I'm allowed to eat. Fast forward. It's three days since my surgery and something is wrong. I can't get up. I feel light headed and dizzy. Fast forward. More hospitals. Fast forward. Working with mom to relearn how to walk correctly and regain my strength and coordination. I'm too tired to do this today, but mom says I have to to get better. Fast forward. I cry as my parents head home after dropping me off at school. I wonder if I made the right choice to go back so soon. I'm still so sick. Fast forward. I feel like a ghost of my former self as I walk through the familiar hallways. I miss having energy. Still, it is good to be back and studying. It is where I belong. Fast forward. I'm still so sick and I don't know why. I hurt and I can't eat and I collapse all the time. I see doctors but they give up on me. Or worse, tell me I'm faking it. Fast forward. It's something called dysautonomia, the doctor says. It's probably because I'm lazy and don't get out of bed. Fast forward. I have ehlers-danlos syndrome. That is it. The primary condition that has caused this whole mess. Things start to make sense. Fast forward. I'm at Mayo Clinic and the test are uncomfortable. I want to go home. But I do have fun with mom on the weekends. Fast Forward. It's a few days before my twenty-third birthday and I'm at a doctor's appointment. He looks at my scans and says I have collapsed jugular veins. Let's schedule a surgery and fix that. It may help. Fast forward. I'm in the surgery room and I'm nervous. They start the surgery and it hurts. I yell at them and sometimes they give me more meds, but not always. I know I need to be tough. Less medication means a quicker recovery. Fast forward. I look at my parents after surgery and tell them I can see better. The world is now in high definition I go home that night feeing pretty ok. Fast forward. It's three days later and I come to a halt in the middle of a hobby shop. I have been there 45 minutes and have not used the wheelchair at all. I didn't even think about it. I start to think my life may be changing again. Fast forward. I'm packing and feel so excited and scared I don't think a human brain is meant to handle this. Fast forward. I step over the threshold of the MV Explorer. I smile because I made it. All past disappointments are irrelevant, because I'm living my dream. Fast forward. I am hiking through the Amazon Rainforest. Is this real life? Fast forward. My new friends leave a note on my cabin door to come meet them for dinner. Friends, as in plural. I save the note, probably forever. Fast forward. I'm dancing in Ghana. Fast forward. I'm petting a cheetah. Fast forward. I'm crawling through war tunnels in Vietnam. Is this real life? Fast forward. I hesitate as I step off the MV Explorer for the last time. I am crying, but it is the good kind of crying. Fast forward. I'm packing again. Fast forward. It is my first day of graduate school at Tufts. Fast forward. I sit here and write this. It has been five years and I am finally where I am supposed to be. I have a magnificent past, an exciting future, and amazing people to share it with. Rewind. Let's watch that last part over again.
So I won't look at it all at once. I'll scroll forwards and backwards and pick out the highlights. I start with an evening five years ago when I started feeling cold, dizzy and tired. Not to worry. It was nothing a good night's sleep wouldn't fix. Except the next day it was worse. Fast forward. Now I'm at the hospital and the doctor is telling me I drank too much last night. She says I'm dehydrated and suffering from a hangover. I ask her what kind of hangover happens after I drank no alcohol and that makes my left side week. She is annoyed. She discharges me. Fast forward. I'm back at my condo and drift to sleep as I wait for my mom to drive the three and a half hours to come rescue me. I dream that I talk to God and she tells me not to worry because my work isn't done yet. I need to help her children. I wake up confused because I'm not religious, but perhaps a little comforted anyway. Fast forward. I'm at a neurologists appointment and I'm starting to believe I had a stroke. Mom is crying and I am scared. Fast forward. An angel of campus health tells me he thinks he knows what is wrong. Another girl like me had strokes because of a hole in her heart and I should be tested. Fast forward. I'm laying down on a table next to an ultrasound machine. It's a Sequoia made my Acuson. My dad made this machine. The ultrasound tech tells me in a moment I will perform a valsalva maneuver and we will see if the saline bubbles injected into my arm will show a hole in my heart. We already see how my heart is pounding. I'm nervous, no I'm scared. I'm terrified that it won't show anything and I'll just keep having strokes until I die. But here we go, I push down and fix my eyes on the screen and see a flurry of bubbles pass through the hole that was supposed to have closed at birth. My eyes tear up, because now I know why. Fast forward. I say good bye to my friends at school. I close the club I had worked months to create. I am going home for heart surgery. Fast forward. No, I cannot have the heart surgery because not enough strokes show up on the MRI. I can take aspirin. Or I can join a study where I will have heart surgery with only a 50/50 chance of actually getting the hole closed. Fast forward. I'm watching friends with my brother and something feels off. It's his bedtime so I go upstairs and sit on my parents bedroom chair. Things make less and less sense. My mom asks if she should call 911. I say yes. I feel my dad's hands in mine and he tells me to keep squeezing them. I do, because if I keep squeezing them, everything will be ok. I have no memories after that for a while. They tell me I yelled at the ER doctor when he tried to send me home the first time. Fast forward. I'm home from the hospital and I'm shaking in bed. I'm afraid if I go to sleep, I won't wake up. Mom stays in my room with me and promises she will make sure I'm ok. Fast forward. It's almost Halloween and I'm at the cardiologist. He says to hell with the FDA, he is going to close the hole in my heart the very next day. I ask if he can wait until after the weekend because I want to celebrate halloween. He says it can't wait. Fast forward. I wear a cute outfit and am all smiles as I go to pre-op. I am excited to get this ove with. I am excited to wake up from surgery and feel safe again. Fast forward. Oops, I wake up during surgery and try to steal a look at the screens that show the operation. I feel something fluttering in my chest where they are working. I'm fascinated but then they give me more medication. Fast forward. I'm upstairs in a hospital room and my leg won't stop bleeding. My blood pressure plumets and the nurses flood my room. I'm fine and don't know what all the fuss is about. My leg stops bleeding and I'm allowed to eat. Fast forward. It's three days since my surgery and something is wrong. I can't get up. I feel light headed and dizzy. Fast forward. More hospitals. Fast forward. Working with mom to relearn how to walk correctly and regain my strength and coordination. I'm too tired to do this today, but mom says I have to to get better. Fast forward. I cry as my parents head home after dropping me off at school. I wonder if I made the right choice to go back so soon. I'm still so sick. Fast forward. I feel like a ghost of my former self as I walk through the familiar hallways. I miss having energy. Still, it is good to be back and studying. It is where I belong. Fast forward. I'm still so sick and I don't know why. I hurt and I can't eat and I collapse all the time. I see doctors but they give up on me. Or worse, tell me I'm faking it. Fast forward. It's something called dysautonomia, the doctor says. It's probably because I'm lazy and don't get out of bed. Fast forward. I have ehlers-danlos syndrome. That is it. The primary condition that has caused this whole mess. Things start to make sense. Fast forward. I'm at Mayo Clinic and the test are uncomfortable. I want to go home. But I do have fun with mom on the weekends. Fast Forward. It's a few days before my twenty-third birthday and I'm at a doctor's appointment. He looks at my scans and says I have collapsed jugular veins. Let's schedule a surgery and fix that. It may help. Fast forward. I'm in the surgery room and I'm nervous. They start the surgery and it hurts. I yell at them and sometimes they give me more meds, but not always. I know I need to be tough. Less medication means a quicker recovery. Fast forward. I look at my parents after surgery and tell them I can see better. The world is now in high definition I go home that night feeing pretty ok. Fast forward. It's three days later and I come to a halt in the middle of a hobby shop. I have been there 45 minutes and have not used the wheelchair at all. I didn't even think about it. I start to think my life may be changing again. Fast forward. I'm packing and feel so excited and scared I don't think a human brain is meant to handle this. Fast forward. I step over the threshold of the MV Explorer. I smile because I made it. All past disappointments are irrelevant, because I'm living my dream. Fast forward. I am hiking through the Amazon Rainforest. Is this real life? Fast forward. My new friends leave a note on my cabin door to come meet them for dinner. Friends, as in plural. I save the note, probably forever. Fast forward. I'm dancing in Ghana. Fast forward. I'm petting a cheetah. Fast forward. I'm crawling through war tunnels in Vietnam. Is this real life? Fast forward. I hesitate as I step off the MV Explorer for the last time. I am crying, but it is the good kind of crying. Fast forward. I'm packing again. Fast forward. It is my first day of graduate school at Tufts. Fast forward. I sit here and write this. It has been five years and I am finally where I am supposed to be. I have a magnificent past, an exciting future, and amazing people to share it with. Rewind. Let's watch that last part over again.
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