I cannot count how many times people have told me that they have prayed for me. Or how many times they've said, "God has a plan." I can hardly fathom how many times I've thought prayers and God's plan were just a copout… but that's changed.
We have never been a churchgoing family. My mom has a strong faith, my dad hardly ever talks about it, so I couldn't tell you his true feelings, and I… I have always had a weak faith. And at times, none at all. I grew up believing in God like everybody else, but that was about it. I prayed occasionally in my youth, but it was rare that I truly remembered to. And then when I was 16, everything changed.
My mom had a high school and college friend named Lenora, or as we called her, Lenny. And yes, I say "had" because she is no longer with us. And her death was a terrible turning point for me.
For as long as I can remember, I have always loved children. But there was something special about Lenny's son Ben. I have never met a child so bright, so happy, so full of life. I have fond memories of him, like when he fell asleep in my lap on the little train in Zilker Park, when I was only 12, and he couldn't have been more than five. It was the first time I had met him, but he trusted me enough by the end of the day to fall asleep in my lap, and even to a 12-year-old me, that seemed profound. Then there was the time at the Hyatt Resort where I played in the Lazy River with him and his sister, carrying him on my shoulders, dunking him in the water, and just generally having a grand time. He has always held a special place in my heart.
As I mentioned, when I was about 16, things changed for me. Lenny, this beautiful, soft-spoken, kind, overall wonderful woman and mother of my favorite kid was diagnosed with cancer, and one that she couldn't beat. I remember we went to visit her in Houston, and she couldn't get up from where she lay on the couch. Her husband sat close by, attentive to the point of not noticing my parents and myself sometimes, ready to help her with everything. It was a depressing scene. Lenny was pale in spite of her makeup, and thin, her bones poking out of her clothes. It's something I will never forget, never get out of my mind's eye, even though I never want to see it again.
But to me, that was far from the worst part. The worst was Ben. This vibrant boy, once so full of life, was dull, quiet, beaten. He wouldn't make eye contact, he slouched around the room, sticking to the edges as though to remain unseen, and only moving to the center of the room when his mom asked for a glass of water, and he obligingly brought it. Then he perched on the edge of the couch for a bit, sitting beside her, before he left again. He did not speak to me, or look at me, through the entire visit.
When I later found out that Lenny had passed away, and left her bereaved and now slightly unstable husband in charge of her two beautiful children, her wonderful Ben, I was more than heartbroken. I cursed God, for how could a loving God do something this horrible? How could he have let this woman, this special woman, suffer and then leave her family behind, leave her family forever changed, and not for the better? I began to ask the age-old question, which had not previously occurred to me: "Why do bad things happen to good people?" And no one could satisfactorily answer this question. I searched for an answer, but was unable to find one. And so I turned my back on God, as I thought he had turned his back on Lenny. On Ben.
I remained this way for the next six years of my life. I did not pray, I did not think about God, I thought religion was a scam, I became cynical about believing, about having faith. So young to be so cynical. And yet I was.
And when I had my accident, it only got worse. The God I had ignored I now hated, and railed against Him, wondering how this could possibly happened to me. What had I done to deserve this? I had been a good person. I had done all the right things with my life. Was this some kind of karma, some twisted fate? And if that was so, how could I believe that God loved me?
I was angry for a while, and then I turned ambivalent. I believed there was a God, because the design I see in nature, in the world, made it difficult to deny. But then I came to believe that He had merely created all, and then turned his back on his creations, moving off somewhere far distant, and not caring. So I didn't care either. When people said they prayed for me, I smiled and thanked them, and when they told me that God had a plan for me, I would just smile and nod, not really knowing what to say. But while I appreciated their efforts, I didn't believe in them, and I thought they were a little blind for not realizing that God was long gone.
But then something changed. My life felt so empty, meaningless. I frequently found myself with less and less to do, less and less important in controlling my own life. I felt lost, and alone. I began to once again contemplate God, and wonder if He was really there, and if so, what I could do to connect, to believe. But I just couldn't make myself take that leap of faith.
And then I met Ryan.
Ryan is a young man not much older than I am at 25. His life has been significantly different from mine. At a very young age he was diagnosed with Duchenne Muscular Dystrophy (DMD), the most common type of muscular dystrophy, which affects 1 in 5000 boys from a young age. There is currently no cure, and life expectancy is usually around 25. As of yet, no one has survived it
But you would never know that Ryan had this hanging over his head. Because he never acts like it. Instead he acts like a normal, good guy, albeit one who is in a wheelchair and has to use of ventilator to assist his breathing occasionally. Ryan told me what he had early on, but I didn't realize it was a more nasty version of muscular dystrophy than I had ever heard of. When I read about the disease in more detail on Ryan's website (as he is an advocate for other boys and young men with DMD, raising awareness in the hopes to find a cure for all of them), I began to sob uncontrollably. This news twisted my heart even more than it had been twisted for Ben. But amazingly enough, this time, I did not question God. I only questioned myself and my faith. Because Ryan has the biggest faith of anyone I've met, adversity or no.
And it was almost as if he tore down all the last barriers I had erected between myself and God. Because if he could have such faith, if he could take that leap, so surely could I. And I did. I accepted Christ, I accepted what it happened me, and it changed everything.
My depression lifted. I came to truly believe that God does not put something on your plate that you can't handle, which my mom had been saying since my accident. My spirits were lifted, I felt vindicated, and I felt loved. I no longer felt empty.
Not two days later I happened to hear a sermon called "Dropped but not forgotten." It spoke of how people thought they had been dropped by God, thought He had turned His back on them, when in reality He had not, and instead was fighting your battle for you. The sermon made me cry about 12 different times, hitting home and pinpointing all of my doubts, and brushing them aside. I have never been able to brush them aside before. But my faith in God seemed to make anything possible.
I don't know if I'll ever be healed. I don't know if that's my path. But I do believe now that I will come out of this tragedy with more than I had before, even if it means I can't walk again. Things in my life are looking up. I've made new local friends. I may be getting a job soon. I plan to go to grad school soon. And I plan to tell many people that God has been looking out for me my whole life, and has helped me greatly since my accident, even if I was too close minded and angry to realize it at the time. But I realize it now. I believe. I have faith. And I hope by reading this, you might, too. Because if I can take that leap, so can you.
Until next time. And so we go!
Tuesday, January 16, 2018
Thursday, May 18, 2017
Anger Management
I'm back! After a long sabbatical of not posting, I've returned. I've returned to tell you that which I feel I must before we can move on, or more accurately before I can move on. Because I've been plagued by these feelings of self-doubt and unhappiness (with myself) and inadequacy. I don't think I've ever felt like inspiration people tell me that I am, and I will tell you why. But first I must explain why I haven't posted. It's because I've been afraid. I'm ashamed of what I'm going to tell you, and I'm afraid that you'll think less of me for it. But if I don't tell you, it will continue to plague me. So at last I write.
Starting two years ago, I became someone that I later no longer recognized as myself. I hid this self from everyone outside of my household. When I would leave my house, I would gather my faculties and not act the way I would act at home. I don't know why. Scratch that; I do know why. Because I was so angry. So angry at the world, angry at the people who surrounded me, angry at God, angry at my situation. And the only way I could deal with this insufferable anger was to become someone else, and that someone else lashed out.
I'm not trying to diminish what I did by saying that I became someone else. I could have controlled things I said, but I didn't. And while everyone who knows me knows I don't exactly have the best filter, they also know I am not mean, particularly for the satisfaction of being mean. That's not who I've ever been before, but it's who I was at home for too long.
Things have been much better. I am far past the anger stage in the grieving process now. But that doesn't excuse the things I said then, at least I don't think so.
I can't tell you any specific things that I said, only that I was often cruel, frequently unkind, very often disparaging, and more. And all of this to the people who were trying to help me. My nurses, my family. Though they have since met the "real me," the one who doesn't say things like that, or even think them, and they have told me that they love me and they stay here for me, it was not so in the beginning. They stayed for my mother, because I was such a tyrant.
As far as I was concerned, nobody could do anything right, because nobody could do anything the way I used to. And so I let my anger loose upon them, and it was not a pretty sight. Every nurse steadfastly took when I dished out until they couldn't take it anymore, and at some point they lashed out in return, and with good reason. Since I had none. At the time I thought their "ineptitude" was awful, but none of my nurses are inept. They are all far from that, I was just too angry to see it at the time.
Personalities ruffled me, actions pissed me off, and no one could do much to please me. I didn't like being manhandled, which I am still today-- the only difference is that I have come to accept it. I didn't like that everyone did things differently, so I didn't know what to expect, though I have since come to accept that as well. It just took a long time. A long time for me to stop being so angry, and me to stop being so mean to the people who were trying to help me. (Don't misunderstand: for those who know me, don't think that I have gotten over my periodic temper flares...as I said, I have become ME again!)
I don't really know what else to say. Perhaps I will just leave you to digest this on your own time and in your own way. It has helped me immensely to get this out, but I hope you can be understanding. That time was probably the biggest trial I will ever experience in my life, other than smaller everyday trials. Trying to get through that anger was nearly impossible. But I'm through it now, and that other self is dead. I hope you can read this and see the real me through the angry me. I was angry at the world for letting this happen, and the same with God (or so I thought at the time.), I was angry with people because they weren't perfect, which is terribly stupid. I was angry that I was completely incapacitated, but mostly I was angry at myself for not wearing a seatbelt. But I have managed, somehow, to get past all this and am the person I used to be.
This blog may not be inspirational, but it comes from my heart and I hope that is enough. Until next time. And so we go.
Starting two years ago, I became someone that I later no longer recognized as myself. I hid this self from everyone outside of my household. When I would leave my house, I would gather my faculties and not act the way I would act at home. I don't know why. Scratch that; I do know why. Because I was so angry. So angry at the world, angry at the people who surrounded me, angry at God, angry at my situation. And the only way I could deal with this insufferable anger was to become someone else, and that someone else lashed out.
I'm not trying to diminish what I did by saying that I became someone else. I could have controlled things I said, but I didn't. And while everyone who knows me knows I don't exactly have the best filter, they also know I am not mean, particularly for the satisfaction of being mean. That's not who I've ever been before, but it's who I was at home for too long.
Things have been much better. I am far past the anger stage in the grieving process now. But that doesn't excuse the things I said then, at least I don't think so.
I can't tell you any specific things that I said, only that I was often cruel, frequently unkind, very often disparaging, and more. And all of this to the people who were trying to help me. My nurses, my family. Though they have since met the "real me," the one who doesn't say things like that, or even think them, and they have told me that they love me and they stay here for me, it was not so in the beginning. They stayed for my mother, because I was such a tyrant.
As far as I was concerned, nobody could do anything right, because nobody could do anything the way I used to. And so I let my anger loose upon them, and it was not a pretty sight. Every nurse steadfastly took when I dished out until they couldn't take it anymore, and at some point they lashed out in return, and with good reason. Since I had none. At the time I thought their "ineptitude" was awful, but none of my nurses are inept. They are all far from that, I was just too angry to see it at the time.
Personalities ruffled me, actions pissed me off, and no one could do much to please me. I didn't like being manhandled, which I am still today-- the only difference is that I have come to accept it. I didn't like that everyone did things differently, so I didn't know what to expect, though I have since come to accept that as well. It just took a long time. A long time for me to stop being so angry, and me to stop being so mean to the people who were trying to help me. (Don't misunderstand: for those who know me, don't think that I have gotten over my periodic temper flares...as I said, I have become ME again!)
I don't really know what else to say. Perhaps I will just leave you to digest this on your own time and in your own way. It has helped me immensely to get this out, but I hope you can be understanding. That time was probably the biggest trial I will ever experience in my life, other than smaller everyday trials. Trying to get through that anger was nearly impossible. But I'm through it now, and that other self is dead. I hope you can read this and see the real me through the angry me. I was angry at the world for letting this happen, and the same with God (or so I thought at the time.), I was angry with people because they weren't perfect, which is terribly stupid. I was angry that I was completely incapacitated, but mostly I was angry at myself for not wearing a seatbelt. But I have managed, somehow, to get past all this and am the person I used to be.
This blog may not be inspirational, but it comes from my heart and I hope that is enough. Until next time. And so we go.
Tuesday, December 20, 2016
The Extended Family: The Nurses
Howdy everybody! In the interest of my sanity, I decided that it would be best for me to do a monthly blog until I get the hang of it. And in the interest of actually having a blog this month, I've decided to do one about the extended family in my house: my nurses. We'll get back to the story of my fantastic hospital visit again, soon, but in the meantime I figured I should tell you all about the quirky and wonderful people that are now in my life.
One of the first nurses that ever came to stay was Youlan. He is an African-American man from Mississippi who has a great sense of humor. The most hilarious part of Youlan is his jokes; not so much the jokes themselves, but how big of a kick he gets out of them! He takes excellent care of me, is kind and attentive, except, perhaps, when he's watching Game of Thrones. I keep getting him addicted to TV shows, and he watches them the way I used to: no one can interrupt, and all of your attention must be focused 100% on every word being said on television. Youlan probably only focuses 95% (fail!), as he keeps an ear out for me. Youlan is very much a man's man: he's built, really strong, and loves cars and flashlights (I swear that's a prerequisite for being a man). At the store on base, my dad's Chief of Staff Greg bought a high-powered flashlight. My dad saw him with it, and almost immediately had to go get one as well. And then Youlan saw it on the table. As soon as work ended he ran to the base exchange and bought, not one, but three! I don't really get this thing with flashlights, but I think most men can relate. Youlan also leaves notes all over the house. He and dad have an ongoing cashew war, and so Youlan will periodically put a sticky note on the cashews that says "Youlan's cashews." He will also add to our shopping lists such things as flashlights and more cashews! I love cashews, and my dad loves cashews, but I'm pretty sure Youlan loves them the most.
The next nurse who came to stay was Ngozi, a beautiful woman from Nigeria. She's happily married with four kids, and still finds time to fit me into her life. Ngozi has the best sense of humor of anyone I've met in a very long time. She has the ability to laugh at herself, as well as others, and at all jokes, good ones or the bad ones my dad makes. We love her, and we pick on her all of the time because we know she can take it. Her latest thing is that "her hands are too big to do that." She has beautiful hands, perfectly proportioned to herself, but according to her, they are way too big. The other day, we were trying to scoot me over to the side in my wheelchair, which involves two people each grabbing one butt cheek and one of them pulling, and one of them pushing! Well, Ngozi is usually a night nurse and doesn't deal with me in my chair, but she was here that day and mom was on one side of the chair, Ngozi on the other and mom was trying to explain where to put her hands. Ngozi kept saying "They are too big! I can only fit one hand!" (And this is under my butt, keep in mind). No one else has ever had trouble, so mom goes over to see that Ngozi is trying to put her hands under the entire cushion of the chair, which doesn't work very well. So for the rest of the day, anytime she paused while thinking about how to do something, I would helpfully supply that "Ngozi can't do that; her hands are too big." all with a perfectly straight face, of course. She took it beautifully, and it made for a fun day.
Youlan is here three times a week in the day, making him my primary day nurse, and Ngozi is here three times a week at night, making her my primary night nurse. On Mondays and Fridays in the daytime, however, we have Brandi, a woman with the most sarcastic and dry sense of humor--as well as an evil giggle--that you have ever met. Between her and her girlfriend, they have five kids (God bless them!), and she has many good stories to tell of their adventures. She is relatively new to the Quad squad, and I'm sure there'll be much more to come about her!
So that just leaves two more night nurses: Tosha and Ethel. Tosha is probably the most quiet of any of the nurses in the Quad squad, but that doesn't mean she isn't awesome! She is so sweet to me at night, taking care of my every need (really, they all are and they all do). She has two kids of her own. Tosha is soft-spoken (and maybe a little shy), but has a great sense of humor: she will laugh at any joke and make a few of her own, but you have to catch them, because she doesn't overdo them like some people (dad!).
Ethel is all kinds of just this side of crazy! A passionate woman from Cameroon, she has four children that she talks about all of the time. I feel like I know them, and it's wonderful. Like Ngozi, she has a strong faith, and is prone to shout "Jesus Christ of Nazareth!" when surprised, which seems to be often. Perhaps the funniest thing with Ethel is her ongoing feud with our cat, Kiki. When we get me ready for bed, Kiki likes to be on the bed because she knows she will get attention if she's there. But not from Ethel. Oh no no. Ethel is terrified of cats. It's gotten a lot better, but in the beginning if she was standing next to my bed doing something or talking to me, and Kiki jumped up on the bed, Ethel would scream, throw her hands in the air, and run away. And then she would be unable to come to that side of the bed until Kiki had left. Her newest thing is to yell at Kiki in her deep voice with her thick Cameroon accent, "Go to your mommy!" any time the cat approaches. Which is often.
Those are all of our permanent nurses, but that doesn't mean it's all of our nurses. There are several more who come here to fill in when others are out. That includes Afanwe, Patti, and Susan.
Afanwe is a man from Cameroon with long dreads, and a vibrant personality. He is a terribly passionate person, particularly regarding politics, the state of his country, and soccer. He is in fact so passionate about politics that I am kind of glad we didn't see much of him during this insane election. I'm sure we would've heard much about every candidate, and at great length!
Patti is a fun-loving nurse from East Texas, but don't hold that against her! She's definitely the most sane of her insane family. A little bit of a flower child, she knows the words to every song you can imagine. My mom and I tend to sing snippets of songs (or quote Lord of the Rings!) to punctuate our daily life. If we encounter an issue or say something that is similar to a line from a song, we then naturally break into that song. It's usually the only line we can remember, but Patti doesn't have that trouble. She can remember the whole song, which helps mom remember it, and then they often sing and dance the rest of the song around the room, while they get me ready. Patti can also play Cards Against Humanity like nobody's business. If we didn't know what a card meant, we can always count on her to tell us.
And that leaves Susan. Susan is one of the kindest older women I've ever met, and she is very much a talker. So much so, that when I first met her I would say that I was "just closing my eyes for a minute" to get some quiet time. But the better I got to know her, the more I liked her. She cares deeply about her faith and her family, and a lot of her talk is about her youngest daughter, who is currently attending college in the Northeast. She is incredible with the sewing machine, and fixed my graduation gown in such a way that I could actually wear it (it's cut up the back, but not all the way, and stitched so that it won't fray). Last I heard of Susan, who has many hobbies, she was learning to circle dance!
Well, that's all about my nurses as far as an introduction, and I guess that means that this blog is finished! I'm sorry for the incredibly long delay; part of it is because I was taking a creative writing class! But more on that later. For now, I'll leave you with this, and the promise that I will actually get a blog out within a month of this one (I hope!)! Thanks for reading, and make sure you share if you like it! I've got to get my numbers up in readership! And so we go!
One of the first nurses that ever came to stay was Youlan. He is an African-American man from Mississippi who has a great sense of humor. The most hilarious part of Youlan is his jokes; not so much the jokes themselves, but how big of a kick he gets out of them! He takes excellent care of me, is kind and attentive, except, perhaps, when he's watching Game of Thrones. I keep getting him addicted to TV shows, and he watches them the way I used to: no one can interrupt, and all of your attention must be focused 100% on every word being said on television. Youlan probably only focuses 95% (fail!), as he keeps an ear out for me. Youlan is very much a man's man: he's built, really strong, and loves cars and flashlights (I swear that's a prerequisite for being a man). At the store on base, my dad's Chief of Staff Greg bought a high-powered flashlight. My dad saw him with it, and almost immediately had to go get one as well. And then Youlan saw it on the table. As soon as work ended he ran to the base exchange and bought, not one, but three! I don't really get this thing with flashlights, but I think most men can relate. Youlan also leaves notes all over the house. He and dad have an ongoing cashew war, and so Youlan will periodically put a sticky note on the cashews that says "Youlan's cashews." He will also add to our shopping lists such things as flashlights and more cashews! I love cashews, and my dad loves cashews, but I'm pretty sure Youlan loves them the most.
The next nurse who came to stay was Ngozi, a beautiful woman from Nigeria. She's happily married with four kids, and still finds time to fit me into her life. Ngozi has the best sense of humor of anyone I've met in a very long time. She has the ability to laugh at herself, as well as others, and at all jokes, good ones or the bad ones my dad makes. We love her, and we pick on her all of the time because we know she can take it. Her latest thing is that "her hands are too big to do that." She has beautiful hands, perfectly proportioned to herself, but according to her, they are way too big. The other day, we were trying to scoot me over to the side in my wheelchair, which involves two people each grabbing one butt cheek and one of them pulling, and one of them pushing! Well, Ngozi is usually a night nurse and doesn't deal with me in my chair, but she was here that day and mom was on one side of the chair, Ngozi on the other and mom was trying to explain where to put her hands. Ngozi kept saying "They are too big! I can only fit one hand!" (And this is under my butt, keep in mind). No one else has ever had trouble, so mom goes over to see that Ngozi is trying to put her hands under the entire cushion of the chair, which doesn't work very well. So for the rest of the day, anytime she paused while thinking about how to do something, I would helpfully supply that "Ngozi can't do that; her hands are too big." all with a perfectly straight face, of course. She took it beautifully, and it made for a fun day.
Youlan is here three times a week in the day, making him my primary day nurse, and Ngozi is here three times a week at night, making her my primary night nurse. On Mondays and Fridays in the daytime, however, we have Brandi, a woman with the most sarcastic and dry sense of humor--as well as an evil giggle--that you have ever met. Between her and her girlfriend, they have five kids (God bless them!), and she has many good stories to tell of their adventures. She is relatively new to the Quad squad, and I'm sure there'll be much more to come about her!
So that just leaves two more night nurses: Tosha and Ethel. Tosha is probably the most quiet of any of the nurses in the Quad squad, but that doesn't mean she isn't awesome! She is so sweet to me at night, taking care of my every need (really, they all are and they all do). She has two kids of her own. Tosha is soft-spoken (and maybe a little shy), but has a great sense of humor: she will laugh at any joke and make a few of her own, but you have to catch them, because she doesn't overdo them like some people (dad!).
Ethel is all kinds of just this side of crazy! A passionate woman from Cameroon, she has four children that she talks about all of the time. I feel like I know them, and it's wonderful. Like Ngozi, she has a strong faith, and is prone to shout "Jesus Christ of Nazareth!" when surprised, which seems to be often. Perhaps the funniest thing with Ethel is her ongoing feud with our cat, Kiki. When we get me ready for bed, Kiki likes to be on the bed because she knows she will get attention if she's there. But not from Ethel. Oh no no. Ethel is terrified of cats. It's gotten a lot better, but in the beginning if she was standing next to my bed doing something or talking to me, and Kiki jumped up on the bed, Ethel would scream, throw her hands in the air, and run away. And then she would be unable to come to that side of the bed until Kiki had left. Her newest thing is to yell at Kiki in her deep voice with her thick Cameroon accent, "Go to your mommy!" any time the cat approaches. Which is often.
Those are all of our permanent nurses, but that doesn't mean it's all of our nurses. There are several more who come here to fill in when others are out. That includes Afanwe, Patti, and Susan.
Afanwe is a man from Cameroon with long dreads, and a vibrant personality. He is a terribly passionate person, particularly regarding politics, the state of his country, and soccer. He is in fact so passionate about politics that I am kind of glad we didn't see much of him during this insane election. I'm sure we would've heard much about every candidate, and at great length!
Patti is a fun-loving nurse from East Texas, but don't hold that against her! She's definitely the most sane of her insane family. A little bit of a flower child, she knows the words to every song you can imagine. My mom and I tend to sing snippets of songs (or quote Lord of the Rings!) to punctuate our daily life. If we encounter an issue or say something that is similar to a line from a song, we then naturally break into that song. It's usually the only line we can remember, but Patti doesn't have that trouble. She can remember the whole song, which helps mom remember it, and then they often sing and dance the rest of the song around the room, while they get me ready. Patti can also play Cards Against Humanity like nobody's business. If we didn't know what a card meant, we can always count on her to tell us.
And that leaves Susan. Susan is one of the kindest older women I've ever met, and she is very much a talker. So much so, that when I first met her I would say that I was "just closing my eyes for a minute" to get some quiet time. But the better I got to know her, the more I liked her. She cares deeply about her faith and her family, and a lot of her talk is about her youngest daughter, who is currently attending college in the Northeast. She is incredible with the sewing machine, and fixed my graduation gown in such a way that I could actually wear it (it's cut up the back, but not all the way, and stitched so that it won't fray). Last I heard of Susan, who has many hobbies, she was learning to circle dance!
Well, that's all about my nurses as far as an introduction, and I guess that means that this blog is finished! I'm sorry for the incredibly long delay; part of it is because I was taking a creative writing class! But more on that later. For now, I'll leave you with this, and the promise that I will actually get a blog out within a month of this one (I hope!)! Thanks for reading, and make sure you share if you like it! I've got to get my numbers up in readership! And so we go!
Thursday, October 6, 2016
2: Accident 2.0
Almost anyone who knows my family knows that we are a family of humor. Most people who know us also know that almost 10 years ago now my mom had a craniotomy in order to remove a benign brain tumor. But just because it was cancer free, didn't mean that the surgery wasn't going to be dangerous. Many different doctors spelled out the specific dangers involved, all very professional, all very stoic, and how did we respond? With humor, of course! When they told us the tumor was growing in a barbell shape, they had barely shown us the images before I said, "It looks like a butt." My dad immediately responded with, "She's a butthead! I always knew it!" And later, when the doctors were explaining how they would have to basically peel my mom's face down to access her skull and therefore the tumor, my dad is reported to have said, "When you put her face back, can you make her look like Cheryl Tiegs?"
After the initial trauma, we responded to my accident in the same way. One of the first things I actually remember was a doctor explaining (probably again, since I woke up every day for a while not remembering any of the previous time spent in the hospital) the severity of my injury, and how it had left me paralyzed. My mom was with me, and throughout the doctor's spiel we were making snide comments, cracking jokes, and just more or less making fools of ourselves as usual. At some point I remember the doctor looking at me with some concern, and saying, "I'm worried that you don't grasp the severity of the situation." And I said, "Doctor, I'm paralyzed, I can't grasp anything!"
But just because my family turns serious situations into comical ones, doesn't mean that we don't "grasp the severity." It's just always been how we deal. And I'm proud to say that is still the case, and that joking in front of the doctor (and the many that came after!) was one of my first real memories after the accident.
But just because it was one of my first real memories, certainly doesn't mean nothing happened between the time of the accident and my recollecting anything. For instance, I don't remember my choir teacher coming and petting my head while I was still unconscious, but it happened. I don't remember when a good friend came and brushed my hair and read me Harry Potter, but it happened. I don't remember when my advisor came and brought me a stuffed animal that would help me later in my recovery, but it happened. So many things happened, mostly involving other people, that I can't recall.
Like most of my last blog, much of what I will now relate I heard secondhand, because I wasn't really aware enough to hear it first hand! But it all happened.
My dad was the first to find out something wasn't right. He was at work here in Austin on Camp Mabry (he is a general in the National Guard, and Texas headquarters are here in Austin), when he got a strange phone call from USAA. He picked up the phone. "Gen. Nichols, how can I help you?" And the man on the other end of the line proceeded to tell him that he was calling because my insurance card had been pulled. At first, dad was confused: did they mean that my health insurance was canceled, or something? But no, the man told him that the insurance card had been pulled by a hospital, because the vehicle had been involved in an accident.
Dad immediately wondered why I wasn't calling him. I had wrecked a car once before (thankfully, no one was hurt that time!), and the first thing I did then was call him. So around this time, while the insurance agent was speaking to him on the other end of the line, dad was sitting in his office running through the worst possible scenarios in his head. Why hasn't she called?
The insurance agent gave him the number of a social worker at the hospital. When he called that number, the social worker asked if he was in San Antonio. When dad told her no, he was in Austin, there was a pause. Pauses in traumatic situations are almost always very heavy. The fist that had already been wrapped around dad's heart tightened. The social worker asked how soon dad could get here, and when he told her probably two hours there was another pause, before she said you need to get here as soon as possible.
Pretty heavy, right? Though I have struggled with this situation over the past two years, I have never had to respond to an event like this. My family and my friends, however, had to.
Because I was an adult, and because of the HIPPA laws of confidentiality, dad couldn't find out what condition I was in. He was again redirected, this time to the ER nurse on my floor. The phone line was busy. He called again. Busy. By this time dad was rushing out of the office to get to his car and get to San Antonio. He was afraid to call mom without any definitive news, but knew he couldn't put it off any longer. So he called her.
For my mom, just like my dad, that day had started off as normal as possible. She was teaching English out at a satellite campus in New Braunfels, when she got a call from my dad. Our family's standard procedure with calls when you're in class or in a meeting is to ignore them. If you get a second call, it is probably an emergency. My mom got a second call.
As she took a minute to answer my dad, the classroom started buzzing around her. When my dad gave her the news, and she asked, "Is she alive?" the classroom went deathly still. Perfect metaphor, don't you think?
Dad said he didn't know, and mom told her class she had to leave and headed toward the hospital. Just as she started driving, just as she started crying, it began to pour. She had to gather herself together, because crying and driving in the rain don't mix very well. What she was afraid of was something that had happened to her earlier that year.
On Valentine's Day in 2014, my mom had gotten a phone call saying that her mom was in the hospital in critical condition. She had to badger the hospital staff to get the truth. It took several calls, and she finally told one of the staff members, "Look, I have a long drive and I will be bringing my daughter: I need to know what I am walking into." She was finally told that her mom had passed away while in the ambulance. She was terrified, on the day of my accident, that again the hospital wasn't telling her (or dad) everything. She was afraid that I was already dead.
Dad finally badgered the people at the hospital into telling him that I was alive, but in critical condition. As he sped--literally--to the hospital, he got a phone call from his best friend, Joe (also in the Guard). Joe was calling to give his support, as he had found out about the accident (the Guard is a surprisingly small community of hundreds of thousands of people). They both broke up a little, but then my dad, like my mom, had to gather himself because it was pouring. I think I can paraphrase Men in Black II here, in saying that "you don't cry because it rains. It rains because you cry."
My parents raced separately to the hospital, and got there within minutes of each other. Mom had called several people to let them know what was going on, including one of my best friends, Rachel, who informed my other best friends: Sarah, Elise, and Myrna. When my dad arrived at the hospital, they were clustered around my mom, and everyone was crying. He hugged all of them and then was able to have a private moment with my mom.
People started trickling in, many from the music department at school: my teachers, my fellow students, my friends, and more. All of mom's friends (they are my friends, as well!) showed up, too. And then they played to the waiting game.
Finally a surgeon came out to talk to my parents. He apparently called me his miracle patient, because my heart had restarted against the odds and he said it had all been me, not him. He still wasn't very hopeful, however, because he didn't know why it did stopped in the first place (they didn't know about my spinal cord injury, yet). He didn't know if I would wake up, or if I did, what condition I would be in. My brain had been without oxygen for quite a while; long enough that no doctor really expected me to wake up, or to ever be cognitive again, ever be me again.
My parents took this news out into the packed waiting room, where there was quite a bit of distress. After several more hours, my parents decided to run home so that my mom could pack things as quickly as possible to be able to stay at the hospital for several days. She remembers one of those movie moments where someone is just throwing random things in a bag as they try to get out before the cops get there, or something. She barely realized what she packed, and then mom rushed back to the hospital, and dad stayed home to take care of the farm--he would come the next morning.
Mom wasn't able to see me at first, as I was apparently getting an MRI or CAT scan of my neck and head. When she was finally allowed into my room, she was overwhelmed by the many monitors flashing in the dark, all of the tubes going into me, especially the intubation tubes going down my throat, and the overall fragile look about me. And let me tell you, I don't remember ever looking fragile in my entire life, and would still like to pretend that that is the case! I am way too cool to be fragile!
More of my friends showed up after visiting hours and were allowed to see me, but I'll definitely get more into that later on. This is about my mom and dad. Mom bedded down on a window seat, in preparation for a long night. She didn't actually spend much time in the there, but instead sat by my side.
Nurses were in and out all night checking monitors, adjusting medications, doing things that mom didn't really understand at the time or worry about. She sat by me, with her hand on my hand, and talked to me. The clock ticked on until finally it was the early hours of September 5th, my mom's birthday. As she was talking to me she saw my eyes open, slide to the side, look at her, and recognize her… and then I was gone again.
Altogether, I feel like this blog was pretty heavy, and I'm sorry for that. It's easy enough to put humor into something later on, when the initial trauma has passed. For my family and friends, this was still very much a time of the initial trauma. But that doesn't mean everything was humorless…
I've been told many times that most of the people who came to see me were rather ridiculous in the waiting room. I can't say that for everybody, but I know that because of some of my friends, the whole group was often laughing and talking loudly, listening to bad jokes, and generally making a nuisance of themselves. Can you imagine? Knowing these people, I certainly can.
I'd like to tell you more about their responses on the first day, next time, be they funny, sad, heartening, or heartbreaking. I promise we'll get to a point where there is a little bit more humor; realize that, whether I've written about it or not, there was humor and laughter every day, as there is (or at least should be) in every day of everyone's lives. I'll see you all next week!
And so we go!
After the initial trauma, we responded to my accident in the same way. One of the first things I actually remember was a doctor explaining (probably again, since I woke up every day for a while not remembering any of the previous time spent in the hospital) the severity of my injury, and how it had left me paralyzed. My mom was with me, and throughout the doctor's spiel we were making snide comments, cracking jokes, and just more or less making fools of ourselves as usual. At some point I remember the doctor looking at me with some concern, and saying, "I'm worried that you don't grasp the severity of the situation." And I said, "Doctor, I'm paralyzed, I can't grasp anything!"
But just because my family turns serious situations into comical ones, doesn't mean that we don't "grasp the severity." It's just always been how we deal. And I'm proud to say that is still the case, and that joking in front of the doctor (and the many that came after!) was one of my first real memories after the accident.
But just because it was one of my first real memories, certainly doesn't mean nothing happened between the time of the accident and my recollecting anything. For instance, I don't remember my choir teacher coming and petting my head while I was still unconscious, but it happened. I don't remember when a good friend came and brushed my hair and read me Harry Potter, but it happened. I don't remember when my advisor came and brought me a stuffed animal that would help me later in my recovery, but it happened. So many things happened, mostly involving other people, that I can't recall.
Like most of my last blog, much of what I will now relate I heard secondhand, because I wasn't really aware enough to hear it first hand! But it all happened.
My dad was the first to find out something wasn't right. He was at work here in Austin on Camp Mabry (he is a general in the National Guard, and Texas headquarters are here in Austin), when he got a strange phone call from USAA. He picked up the phone. "Gen. Nichols, how can I help you?" And the man on the other end of the line proceeded to tell him that he was calling because my insurance card had been pulled. At first, dad was confused: did they mean that my health insurance was canceled, or something? But no, the man told him that the insurance card had been pulled by a hospital, because the vehicle had been involved in an accident.
Dad immediately wondered why I wasn't calling him. I had wrecked a car once before (thankfully, no one was hurt that time!), and the first thing I did then was call him. So around this time, while the insurance agent was speaking to him on the other end of the line, dad was sitting in his office running through the worst possible scenarios in his head. Why hasn't she called?
The insurance agent gave him the number of a social worker at the hospital. When he called that number, the social worker asked if he was in San Antonio. When dad told her no, he was in Austin, there was a pause. Pauses in traumatic situations are almost always very heavy. The fist that had already been wrapped around dad's heart tightened. The social worker asked how soon dad could get here, and when he told her probably two hours there was another pause, before she said you need to get here as soon as possible.
Pretty heavy, right? Though I have struggled with this situation over the past two years, I have never had to respond to an event like this. My family and my friends, however, had to.
Because I was an adult, and because of the HIPPA laws of confidentiality, dad couldn't find out what condition I was in. He was again redirected, this time to the ER nurse on my floor. The phone line was busy. He called again. Busy. By this time dad was rushing out of the office to get to his car and get to San Antonio. He was afraid to call mom without any definitive news, but knew he couldn't put it off any longer. So he called her.
For my mom, just like my dad, that day had started off as normal as possible. She was teaching English out at a satellite campus in New Braunfels, when she got a call from my dad. Our family's standard procedure with calls when you're in class or in a meeting is to ignore them. If you get a second call, it is probably an emergency. My mom got a second call.
As she took a minute to answer my dad, the classroom started buzzing around her. When my dad gave her the news, and she asked, "Is she alive?" the classroom went deathly still. Perfect metaphor, don't you think?
Dad said he didn't know, and mom told her class she had to leave and headed toward the hospital. Just as she started driving, just as she started crying, it began to pour. She had to gather herself together, because crying and driving in the rain don't mix very well. What she was afraid of was something that had happened to her earlier that year.
On Valentine's Day in 2014, my mom had gotten a phone call saying that her mom was in the hospital in critical condition. She had to badger the hospital staff to get the truth. It took several calls, and she finally told one of the staff members, "Look, I have a long drive and I will be bringing my daughter: I need to know what I am walking into." She was finally told that her mom had passed away while in the ambulance. She was terrified, on the day of my accident, that again the hospital wasn't telling her (or dad) everything. She was afraid that I was already dead.
Dad finally badgered the people at the hospital into telling him that I was alive, but in critical condition. As he sped--literally--to the hospital, he got a phone call from his best friend, Joe (also in the Guard). Joe was calling to give his support, as he had found out about the accident (the Guard is a surprisingly small community of hundreds of thousands of people). They both broke up a little, but then my dad, like my mom, had to gather himself because it was pouring. I think I can paraphrase Men in Black II here, in saying that "you don't cry because it rains. It rains because you cry."
My parents raced separately to the hospital, and got there within minutes of each other. Mom had called several people to let them know what was going on, including one of my best friends, Rachel, who informed my other best friends: Sarah, Elise, and Myrna. When my dad arrived at the hospital, they were clustered around my mom, and everyone was crying. He hugged all of them and then was able to have a private moment with my mom.
People started trickling in, many from the music department at school: my teachers, my fellow students, my friends, and more. All of mom's friends (they are my friends, as well!) showed up, too. And then they played to the waiting game.
Finally a surgeon came out to talk to my parents. He apparently called me his miracle patient, because my heart had restarted against the odds and he said it had all been me, not him. He still wasn't very hopeful, however, because he didn't know why it did stopped in the first place (they didn't know about my spinal cord injury, yet). He didn't know if I would wake up, or if I did, what condition I would be in. My brain had been without oxygen for quite a while; long enough that no doctor really expected me to wake up, or to ever be cognitive again, ever be me again.
My parents took this news out into the packed waiting room, where there was quite a bit of distress. After several more hours, my parents decided to run home so that my mom could pack things as quickly as possible to be able to stay at the hospital for several days. She remembers one of those movie moments where someone is just throwing random things in a bag as they try to get out before the cops get there, or something. She barely realized what she packed, and then mom rushed back to the hospital, and dad stayed home to take care of the farm--he would come the next morning.
Mom wasn't able to see me at first, as I was apparently getting an MRI or CAT scan of my neck and head. When she was finally allowed into my room, she was overwhelmed by the many monitors flashing in the dark, all of the tubes going into me, especially the intubation tubes going down my throat, and the overall fragile look about me. And let me tell you, I don't remember ever looking fragile in my entire life, and would still like to pretend that that is the case! I am way too cool to be fragile!
More of my friends showed up after visiting hours and were allowed to see me, but I'll definitely get more into that later on. This is about my mom and dad. Mom bedded down on a window seat, in preparation for a long night. She didn't actually spend much time in the there, but instead sat by my side.
Nurses were in and out all night checking monitors, adjusting medications, doing things that mom didn't really understand at the time or worry about. She sat by me, with her hand on my hand, and talked to me. The clock ticked on until finally it was the early hours of September 5th, my mom's birthday. As she was talking to me she saw my eyes open, slide to the side, look at her, and recognize her… and then I was gone again.
Altogether, I feel like this blog was pretty heavy, and I'm sorry for that. It's easy enough to put humor into something later on, when the initial trauma has passed. For my family and friends, this was still very much a time of the initial trauma. But that doesn't mean everything was humorless…
I've been told many times that most of the people who came to see me were rather ridiculous in the waiting room. I can't say that for everybody, but I know that because of some of my friends, the whole group was often laughing and talking loudly, listening to bad jokes, and generally making a nuisance of themselves. Can you imagine? Knowing these people, I certainly can.
I'd like to tell you more about their responses on the first day, next time, be they funny, sad, heartening, or heartbreaking. I promise we'll get to a point where there is a little bit more humor; realize that, whether I've written about it or not, there was humor and laughter every day, as there is (or at least should be) in every day of everyone's lives. I'll see you all next week!
And so we go!
Monday, October 3, 2016
1: From Humble Beginnings…
I've decided to write a blog; I've also decided that it's rather difficult. Of all the many things I could write about, nothing seems to come to mind in this particular moment. I mean, I don't want to be one of those people that writes about their trip to the grocery store (unless something amazing happened) or the wonderful bowel movement they just had (even if something amazing happened, I think I'd skip that!). So instead, I guess I should just start from the beginning.
My name is Alexa and I'm a quadriplegic. Man, it sounds like I'm at an AA meeting! But really, I'm paralyzed from the neck down and I breathe using a ventilator. Two years ago last September I was in a car accident: he crossed three lanes of traffic to hit me head-on, and I wasn't wearing my seatbelt, so between the two it was a pretty bad accident for me. I could be the poster child for kids needing to wear their seat belts!
In the accident I sustained some relatively minor injuries, and then one very major one: my spinal cord was damaged at C1, so right at the base of my brain. It's the highest place someone can get a spinal cord injury (SCI). Well, I never did anything unless it was 100%! So my spinal cord wasn't completely severed, but it's considered a "complete" injury to the cord because the chances of getting better on my own are extremely unlikely. Definitely still dealing with that idea two years later.
But I don't actually want this blog to be all maudlin and depressing; if I want it to be enlightening and enjoyable, overall. I want to tell everyone about "The Quad Squad," which consists of me (obviously), as well as my family, my friends, my nurses, and my many pets! Sometimes I'll be giving you info about my day-to-day life as a quadriplegic – which often is pretty boring, so I may skip a lot! – and others I will recount what I think to be interesting/funny/thought-provoking/anything else you can think of experiences. For those curious, I guess some of this first blog will be more serious, as I'll tell you about my accident.
I was on my way to school on September 4, 2014, when, as I mentioned, I was in a head-on collision. At that point, almost the entire week previous and the following 2 1/2 weeks I do not remember, so I can only truly relate what happened based on what other people have told me. I technically did not come out of that collision alive: the shock to my spinal cord when my neck snapped was so sharp that my heart immediately stopped, having gotten the signal from my spine that, "Oh hey, I think we are dead now! Better stop!" I was incredibly lucky to have an EMT team that had mad skills; I've actually had other EMTs say that they would not have been able to bring me back. But these guys did: they got my heart to start beating again, and rushed me to the hospital.
Apparently, upon arriving at the trauma hospital, my heart stopped again, and the doctors performed an emergency thoracotomy: they literally stuck their fingers between my ribs and massaged my heart until it restarted! I know, crazy cool, right? By this point my brain had been without oxygen for several minutes, especially right after the crash. While they weren't thinking about it just then, the doctors would later assume it likely that I would have no brain function if I woke up, if I woke up at all. I went immediately in for some exploratory and other surgeries, to find out why my heart had stopped. They actually wouldn't find out for a little while, as there were no indicators of spinal cord damage other than a cracked vertebrae, which happens all the time without people sustaining SCIs as well.
I am mostly going to do this first blog from my point of view (kind of, since I don't remember much!). I only mean that I will get into the rest of The Quad Squad's experiences with this at another time. In the meantime, I left off where I was on the operating table. Well, they got me stable, though still classified as critical, and told my parents that if worst came to worst I would never wake up again as I was in a coma. My mom refused to believe them, and that night sometime after midnight, when it was officially September 5, which is coincidentally my mom's birthday, I apparently opened my eyes. My mom was the only one there, and while I couldn't say anything for the tubes stuck down my throat, she swears she saw recognition in my eyes. She told the doctors this, but they had a hard time believing her, not seeing it for themselves. It was only after a few days, when the expression on my face showed that I was apparently exceedingly angry that they were ignoring me, as far as I was concerned, that they realized I was actually aware of my surroundings. From then on, they included me in their medical conversations.
What else can I say? I got a fusion surgery, from the base of my skull to my C2 vertebrae, a tracheostomy, where they put a tube down my throat for me to breathe with permanently, so they don't have to be in my mouth where I can't talk, and they gave me my prognosis. While I did stay in the trauma hospital for three weeks, I'll get into that later. The next time you'll hear from me, the blog will be about my parents and friends during this trying time, and how for the most part they were all a bunch of bad-asses. Crying bad-asses, but bad-asses nonetheless.
Until our next meeting! And in the words of one of my favorite fictional characters, "And so we go!"
My name is Alexa and I'm a quadriplegic. Man, it sounds like I'm at an AA meeting! But really, I'm paralyzed from the neck down and I breathe using a ventilator. Two years ago last September I was in a car accident: he crossed three lanes of traffic to hit me head-on, and I wasn't wearing my seatbelt, so between the two it was a pretty bad accident for me. I could be the poster child for kids needing to wear their seat belts!
In the accident I sustained some relatively minor injuries, and then one very major one: my spinal cord was damaged at C1, so right at the base of my brain. It's the highest place someone can get a spinal cord injury (SCI). Well, I never did anything unless it was 100%! So my spinal cord wasn't completely severed, but it's considered a "complete" injury to the cord because the chances of getting better on my own are extremely unlikely. Definitely still dealing with that idea two years later.
But I don't actually want this blog to be all maudlin and depressing; if I want it to be enlightening and enjoyable, overall. I want to tell everyone about "The Quad Squad," which consists of me (obviously), as well as my family, my friends, my nurses, and my many pets! Sometimes I'll be giving you info about my day-to-day life as a quadriplegic – which often is pretty boring, so I may skip a lot! – and others I will recount what I think to be interesting/funny/thought-provoking/anything else you can think of experiences. For those curious, I guess some of this first blog will be more serious, as I'll tell you about my accident.
I was on my way to school on September 4, 2014, when, as I mentioned, I was in a head-on collision. At that point, almost the entire week previous and the following 2 1/2 weeks I do not remember, so I can only truly relate what happened based on what other people have told me. I technically did not come out of that collision alive: the shock to my spinal cord when my neck snapped was so sharp that my heart immediately stopped, having gotten the signal from my spine that, "Oh hey, I think we are dead now! Better stop!" I was incredibly lucky to have an EMT team that had mad skills; I've actually had other EMTs say that they would not have been able to bring me back. But these guys did: they got my heart to start beating again, and rushed me to the hospital.
Apparently, upon arriving at the trauma hospital, my heart stopped again, and the doctors performed an emergency thoracotomy: they literally stuck their fingers between my ribs and massaged my heart until it restarted! I know, crazy cool, right? By this point my brain had been without oxygen for several minutes, especially right after the crash. While they weren't thinking about it just then, the doctors would later assume it likely that I would have no brain function if I woke up, if I woke up at all. I went immediately in for some exploratory and other surgeries, to find out why my heart had stopped. They actually wouldn't find out for a little while, as there were no indicators of spinal cord damage other than a cracked vertebrae, which happens all the time without people sustaining SCIs as well.
I am mostly going to do this first blog from my point of view (kind of, since I don't remember much!). I only mean that I will get into the rest of The Quad Squad's experiences with this at another time. In the meantime, I left off where I was on the operating table. Well, they got me stable, though still classified as critical, and told my parents that if worst came to worst I would never wake up again as I was in a coma. My mom refused to believe them, and that night sometime after midnight, when it was officially September 5, which is coincidentally my mom's birthday, I apparently opened my eyes. My mom was the only one there, and while I couldn't say anything for the tubes stuck down my throat, she swears she saw recognition in my eyes. She told the doctors this, but they had a hard time believing her, not seeing it for themselves. It was only after a few days, when the expression on my face showed that I was apparently exceedingly angry that they were ignoring me, as far as I was concerned, that they realized I was actually aware of my surroundings. From then on, they included me in their medical conversations.
What else can I say? I got a fusion surgery, from the base of my skull to my C2 vertebrae, a tracheostomy, where they put a tube down my throat for me to breathe with permanently, so they don't have to be in my mouth where I can't talk, and they gave me my prognosis. While I did stay in the trauma hospital for three weeks, I'll get into that later. The next time you'll hear from me, the blog will be about my parents and friends during this trying time, and how for the most part they were all a bunch of bad-asses. Crying bad-asses, but bad-asses nonetheless.
Until our next meeting! And in the words of one of my favorite fictional characters, "And so we go!"
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