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This intro section was added more than a year after I had originally posted my first two Bio Pages. When I decided to start my Website in May, 2002, I really didn't want to include that much about me. But then I started getting lots of email from people who wanted to know more about me, so I decided to add this bio section, mostly so that people could just understand me a little better. This was the first time that I've tried to put all of this into words, and it wasn't at all easy for me. Originally posted June 11, 2003: Over the past months I have received such supportive email about these pages. Some people have said that I've been an inspiration to them and that reading about my life has helped them with their own personal problems. Many people also tell me that they are so impressed at how strong and positive I am. Well, I've never really considered myself to be all that strong, and without my positive outlook and my strong faith I would have likely given up a long time ago. Besides, I haven't really gotten through much of this by myself, as many wonderful people have helped me get through all this. But I'm am thrilled to know that I've been able to help others in some small way. I may be a bit unique, but I really don't consider myself to be all that special. It's just that I'm a little different from most people. Yes, things have been a little rough at times, but I don't feel that I've had it any worse than anyone else, because everyone single person has their own problems and losses to deal with in life. It's just that mine started a little early. Not the Whole Story Everything that I have written on these few pages is all completely true, but I have left so much out. This is sort of just a little peek into my life and is all that I'm willing to publicly share right now. I haven't even tried to include my most difficult (an most personal) problems that I have to deal with. My life and what happened to me is really so much more complicated than what is written here. Believe it or not, even stuff like my age is not all that simple. So, I really doubt that most people would even believe me if I put my entire story here. And those who did believe my story would probably think of me as some sort of alien or something. And I wouldn't blame them at all, because, honestly, the whole thing really is totally unbelievable. Several of my doctors have told me that I really should consider writing a book about my life, but I'm not sure that I'll every be able to open up my personal life or my inner soul that much. Some of what I've had to get through has just been so incredibly difficult and is so hard to accept. Being too Unique Even my doctors had trouble believing me at first, but now that most of them understand me, they tell me how totally unique I am and that it really is a miracle that I have even survived. My doctors cannot find another case even close to mine, even though they have contacted many experts about me. There just doesn't seem to be anyone else quite like me anywhere. Yes, I do realize that every single person is a unique individual, but apparently I'm a bit more unique than most. This isn't really a good thing, because it makes it nearly impossible to explain most of what I am going through and it has often made it really difficult for me to get the help that I need. And dealing with my health insurance company has been a real nightmare at times. The hardest part about being so unique is that it often makes me feel so completely alone. Giving the Wrong Impression Now I'm really afraid that I may have given the wrong impression here. Please understand that my life is not horrible or anything at all like that. It's just been sort of difficult at times. But I have been blessed with a really wonderful life so far and I really appreciate all that I have. And I'm actually a very happy person most of the time, so please don't feel at all sorry for me. I didn't write any of this to gain attention or for any sympathy. I really don't need that. All I want is just a little understanding. Page Menu: | Introduction | First Part | Second Part | Third Part | Links |
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First Part My Name Well, first of all, my real name really is Arwen. And I live near the White Mountains, in Northern New Hampshire, about 60 miles from Canada.
My mother was such a huge Lord Of The Ring fan that she decided to name her daughter after an elf! But it gets worse . . . My middle name is Eve, which is short for Evenstar! Actually I really like my name. It's so much better than having some boring common name. It turns out that my name really suits me, because I am tall and slender, just like Tolkien's elves. Arwen actually means "noble maiden", so it's been hard to live up to my mother's expectations. Well, let's see what else I can tell you . . . I grew up with just one sibling, an older brother, who was in college when I arrived. I don't think that my parents exactly planned on me. My Early Years When I was about 2-1/2 years old, I went on my first trip out of New England. We drove cross country to California, where my brother was transferring to Cal Poly San Luis Obispo, where he planned to complete his degree in architecture. After getting my brother settled in at his new school, my parents decided to head over to the coast to see the Pacific Ocean before heading back east.
We were traveling on highway 1, just north of
San Simeon, when another car came around the corner on the
wrong side of the road right in front of us. My father had to
go off the road to avoid hitting the car head on, And I was airlifted to a hospital in very critical condition. I had suffered severe head trauma with significant brain swelling, two skull fractures and internal bleeding. The doctors never expected me to make it through the night. Obviously I did somehow survive, but I spent the next 46 days of my life in a coma on life support. My chances of ever coming out of the coma were almost non-existent. Then at 6:10 PM on October 31st, I did something that no one expected. I opened my eyes again and cried. Recovery When I first came out of my coma, I was more like a 6-month-old infant than a 2-1/2 year old toddler. I remained in the hospital for another three months, before I was well enough to be transferred to a children's rehabilitation center in January. At first they thought that my brain had been so badly damaged that I would remain retarded forever. I spent the next eight months there, where I had to relearn everything. At first, I was not able to walk, talk, eat, dress, or do any of the things I had done before the accident. I was extremely lucky that my head injuries didn't cause more permanent damage, and by the end of August, I was ready to leave the rehab center. By now, I was functioning at almost the same level as before the accident, which was that of a normal 2-1/2 year. Unfortunately, I was now almost 3-1/2 years old. I had basically lost an entire year of my life and still had a lot of catching up to do. The next problem was that I had no where to go. I guess there were several options available, but I'm not sure what they all were. I think that the State of California wanted to put me up for adoption. My only living grandparents were really too old to take me. During this time my poor brother had to drop out of school. All my expensive treatment had completely used up the money from our parent's estate. He had moved nearby so he could be near me and was working in construction. My brother wanted me to go live with him, but no one seemed to think that this was a very good idea, since he was a single male, who didn't really know anything about taking care of a little kid. Thank God that my wonderful brother can be a really stubborn person. Somehow he convinced the state to allow him to be my guardian. Page Menu: | Introduction | First Part | Second Part | Third Part | Links |
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Second Part My New Home In September we flew back east, to northern New Hampshire, where my brother was starting a new job at a ski area in the White Mountains. Just two years later my brother got married to a wonderful woman and I got to be their flower girl. I even started kindergarten on time with kids my own age! I have been so incredibly lucky!
That doesn't mean that my life has been easy.
On the contrary, it's been extremely difficult much of the time. Now I'm pretty sure that I'm giving you all the wrong idea here. My doctor says that I'm really very intelligent . . . it's just that I'm wired a bit different than other people. He says that I even think differently. I don't really understand exactly what that all means, but I do know that I need things to be very direct and people to be totally honest with me. I have trouble with abstract things like lying or people not saying what they really mean. I also have a very difficult time controlling my emotions. This can be very embarrassing, as I am extremely sensitive and cry very easily. Trust me, I'm a real case during a sad movie. I also have to deal with severe migraines and something sort of like epileptic fits. They were caused by something like an electrical storm in my brain, which robbed me of an entire day every now and then. I try not to let my little problems stop me from doing anything, but they sure have messed up some of my more promising relationships. I really love the outdoors and my favorite recreations are hiking, skiing, and snowshoeing. And I always try to cherish the wonders of life. My Hero (originally written May 29, 2002)
I've only had this website for just a few weeks
now, but I already received so many wonderful emails from people who
were touched by my story. Many have said that I have been a
real inspiration to them in the way that I view life. Some of
these people have real problems of their own, but they all have
thanked me But I also feel like I owe all you a bit more here. My main reason for posting my own story was that I just kind of needed to finally write it down. I don't remember anything at all about the accident, so I don't really feel like it was that traumatic, other than I know that is how my parents died. And I didn't even understand that they had died for about six months later. I really am mostly ok with what happened and I do try to be positive as much as possible.
The hardest part for me is that I don't even
remember my parents. And that really hurts and makes me feel
that there is a huge hole in me. My head problems are
something that I have to deal with every day, But you need to understand that my brother is the real hero here. I hate to think about what might have happened to me with out his constant support. When I was in my coma, he was there every single day, talking to me and praying for me. The doctors actually told him that there was almost no chance of me ever coming out of the coma and that he should just accept that. But he has so much faith. He says that he just somehow knew that I was going to be ok. He never gave up on me. And when I did get better, he fought so hard to keep us together. Everyone was telling him that I would be better off being put up for adoption and having parents to raise me, but somehow he knew what was really best for me. He taught me how to have faith in both God and in myself. And he never let me give up on anything, no matter how difficult it was for me. He just always says that I can do it, I just need to work a bit harder. I really do love life and I have a great family and some wonderful friends to love. What more could I ever want? 2003 Update (originally written May 17, 2003) I've been meaning to update this page for months now, but I could never seem to get it started. First of all, I need to explain that since last July my life has been completely turned upside down. For one thing, I've had to deal with a tragic loss in my life. I suddenly lost my brother early last summer, due to a really strange accident. My sister-in-law and I have been trying to deal with this, but sometimes it's just really hard. My brother always was such a source of strength for both of us and he took care of us so well. We just were not at all prepared for this and we both miss him dearly. It's been so difficult for us to figure out how to do things around here that he always took care of. But we're both survivors and we both try to stay positive, so I know that we'll get though this. And I'm also going through some major life changes, due to some major physical and emotional difficulties, which I'm trying my best to get taken care of. But it's been really a painfully slow process, as my problems are terribly complicated. I've been traveling all over this state and even up into Canada to see specialists. The specifics about my physical and psychological problems are really quite personal, so I'm not about to post any of the details here. But I'm willing to share some general stuff about this.
I have two major problems. It turns out that
one is actually a neurological birth defect and the other is a
result of what happened to me when I was really little. I'm
lucky in that my problems are mostly emotional in how they affect
me, and since my brain is wired a little differently than in other
people, my thinking is also a little different. Because of
this, I come across as sort of an airhead, even though my IQ is well
above normal. I often have lots of trouble understanding very
basic things, yet really complicated things are often very easy for
me to grasp. I drove my teachers completely nuts! My first surgery is now confirmed for Friday, May 30, 2003. My insurance company still won't pay for this, but my surgeon is trying to get them to reconsider. All my doctors agree that these operations are essential to my future health and well being. But, since my problems are a bit unusual, the insurance company isn't being very understanding. Being unique is definitely not a good thing, when dealing with insurance companies. I met with my new favorite surgeon this past Wednesday and he explained everything to me again. I asked if my operation would really last for 8 hours. He told me that it would actually take quite a bit longer than that, more like 10 to 12 hours, if everything went really well. He explained that my operation involves six separate procedures, and two teams of surgeons. Apparently it will be the most complicated operation of its type that's been done at this hospital. My doctor immediately noticed that this sort of scared me (I'm really horrible at hiding my panic). So, he just gave me a big smile and assured me that he really does knows what he's doing. I could not help giving him a big smile back and felt so much better after that. So it looks like I'll be knocked out around 7am and probably won't wake up until after 7pm. I'm a bit scared to go through all these procedures, so I could sure use any prayers on that day. Thanks so much for all of you who have sent me all the wonderful and supportive email. Post Op (originally written June 11, 2003) My operation went extremely well, even though it lasted for 13 hours. Recovery is going to take a while, but I'm doing a little better every single day now. So many people have asked about my operation, so I'll probably post more about it here, when I do my next update. I want to end this section with one of my favorite quotes: "The world is indeed full of peril, and in it there are many dark places; but still there is much that is fair, and though in all lands love is now mingled with grief, it grows perhaps the greater." J.R.R. Tolkien -- from "The Lord of the Rings Page Menu: | Introduction | First Part | Second Part | Third Part | Links |
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Third Part My Life Since May 2003 (last updated 10/07/07) June 14, 2003: added a Thanks Bethesda and ES Forum Page in my Morrowind Journal for the awesome support that Bethesda and the Elder Scrolls Forum community gave me, during my first major operation in 2003. September 6, 2004:
So many people have asked about my operations,
and it took me a really long time to add this page.
Dartmouth Medical Center - where I've been spending a lot of time lately. This section covers the last three of my four recent surgeries:
May 30, 2003 Operation (originally written February 5, 2004) Besides doing some hiking and trying to get back to having a normal life, I've continued to see my surgeons every couple of months. Plus I've been having tests for my next surgery, when is actually going to happen next week. This one involves a procedure that very few surgeons have any experience with. So, I'll be going to a specialist for this, at a totally different medical center. In fact I'm going up to Montreal, Canada this time. There are a couple of specialists that I could go to in the United States, but they are all really far away. And Montreal is only less than a three-hour drive from my home. Plus my surgeon in Montreal, is rated as one of the best surgeons in the world. Plus I can have my operation done for less than half what it would costs in the United States. This is pretty important, as my crummy health insurance isn't going to cover any of this again. (Being so unique just isn't at all helpful, when you're dealing with insurance companies.) Here's my timetable: I have to check in at Montreal on Sunday the 8th, as there are some pre-surgery stuff and still a few more tests that I have to go through. Then I get a bed at the hospital on Monday evening and my surgery is early on Tuesday the 10th. I don't get to go home until Thursday the 19th. Oops, that came out worse than it really is . . . I won’t be totally incapacitated all that time. Knowing me, I’ll be out of bed the next day and walk around at least a little. I’m only confined to the hospital room until about Friday the 13th. Then I spend the rest of the time at a medical rehab residency-type place. (There's a chance that I'll be released a day or so earlier, if I heal fast again.) I'll have to be cared for at home for about another couple of weeks, as I'm not supposed to do much physical stuff at all. Anyhoo, I just wanted to let everyone know what's happening. And that I won't be online again until sometime around Feb 20th.
I'm Back Home Again (originally written February 22, 2004) I arrived home late on Friday afternoon, but the 3-1/2 hour drive took quite a lot out of me. And it didn't help at all that the United States customs wouldn't let me bring a small plant, that was given to me by a new friend, across the border. My emotions just didn't need that. I'm still really tired, and can't sit up at my computer for very long yet, but I wanted to let you all know that I'm doing ok. My surgery went very well, and I received excellent care while in recovery there for another week. And my surgeon was amazed at how quickly I healed ... he had never seen anyone heal so fast. But I'm still not supposed to do much of anything but get lots of rest for the next week or so. Check Up and Follow-up (originally written March 2, 2004) Well I actually behaved myself and didn't do much at all for my first week home, mostly just because I was just too tired and too sore to even want to move. But I had to return to Dartmouth Medical Center on the following week (March 2nd), to see three of my medical doctors there. And this meant moving and bouncing in the car, and I this time I had to drive. It wasn't horrible, but it was pretty uncomfortable for most of the 90 minute drive. I saw my two surgeons first and we agreed that I needed to have another surgery, as sort of a follow-up from my surgery there last May. This was something that I had known about since last summer, so it wasn't a surprise or anything. I had at first been told that I would have to wait at least a year to heal, but when I had seen my surgeons in November, that both said that I had healed enough. I just hadn't been able to schedule this procedure until after my February operation. But now that my healing was going pretty well, we scheduled my next operation for May 12th. Surgery Day . . . Again (originally written May 12, 2004) Over the past couple of weeks I had been really bumming out over this next procedure. I was really dreading having to go through yet another operation. It wasn't that I was afraid of the operation, as it was pretty minor compared to my other two, I just didn't want to face another long painful healing process again, especially since I was still healing and still in pain from my last operation. Dealing with the pain wasn't really a big deal, but being stuck at home so much, and not being able to be active was really getting to me. Plus this next procedure involved messing up my appearance again, with more hair being shaved, and probably being stuck with another large, ugly bandage on my head for weeks again. . . . Ok, so I'm a bit vain. But you really have to understand that my appearance has been a major problem for so long. And my other two operations had improved things so much for me. Now that I was finally comfortable with how I looked, I just wasn't ready to give that up yet. But then I realized how silly that was. After all, bandages and stuff were just temporary. I really needed to have this operation. I would soon heal again. I guess that I just needed to deal with all my insecurities, so that I could face what was ahead. But I got through it just fine, and by the day of my operation, I was completely ready. My surgery was scheduled for 2 PM, but shortly after 9 AM the medical center called me, and said that my operation would have to be postponed, as they were "experiencing IV problems". She wouldn't say exactly what the problem was, but the result was that I couldn't have anesthesia. Which meant that my operation would have to be postponed . . . probably for at least a month. NO! . . . Now I was on the verge of tears, which might seem pretty silly. But I just needed to get this over with, and waiting would just make it worse. So, I held it together, and asked if there was some way that I could still have my operation today. She said that the only was was with a "local anesthesia." I said, "ok", which surprised her. She said that she would have to clear it with my surgeon. She called me back a few minutes later. My surgeon was willing, just as long as I understood that this was a 3 to 4 hour operation. I told her that I already knew that, and that I also understood that it would be painful. She then said something like, "Honey, you're a lot braver than I am!" This surgery was indeed quite painful, as it was all done while I was awake. But it was also very interesting, as I was totally aware of everything that was happening. I had was a bunch of Novocain shots in my scalp . . . like about 40 of them! Each of which really hurt, and made tears pour out of my eyes. But it was bearable and was the only really painful part of the entire operation. The neat part (for me) was that I got to interact with everyone involved. (And they all had to deal with my constant chatter, and likely wished that I had been put to sleep.) And when it was over . . . I just stood up and walked out. And I was back home in time for dinner, although I was not feeling well enough to eat. Two days later, on Friday morning, my right eye began to swell up. I took this really well and didn't even panic. Well, at least not until it became difficult to see. Then I called the medical center and was told that this was a "normal side effect." Ok . . . but . . . THIS REALLY DOESN'T FEEL "NORMAL"!!!!
So I freaked out a bit. But I finally
relaxed a little when I was told that this should only last a day or
two. I was told to "sleep upright" (which, by the way, is
impossible). The next morning, after a long night of
"sleeping" upright, both eyes were nearly swollen shut.
Thankfully this didn't last long, and the swelling was nearly gone
by lunch time. I returned to the medical center on Tuesday,
and my stitches were all removed. Which hurt! But
I was a lot more comfortable after that and could sleep again
without taking any pain pills. And almost all of the ugly glue
is now gone, so it doesn't even look bad anymore. October 2007 Update (originally written October 7, 2007) I survived the July 19th surgery - which was really painful . . . since I had to remain awake again this time. Having four operations in less than 14 months was extremely hard on me. Besides the pain that I had to endure (which was considerable), I had to spend months being physically inactive . . . which is not easy for someone as hyper as me. But everything that I went through was all worth it. Some of the individual procedures were not totally successful, but overall my operations were very successful. The end result was that my biggest physical problems, which resulted from my birth defect, were corrected. I still have some minor problems, so I still have to see a therapist . . . where I have to endure painful monthly sessions. But I'm not really complaining, as my life is sooo much better than it was. In September 2005 (just over a year after my last operation) I started college. Being able to go to college was so HUGE for me . . . since I had never expected to have the opportunity. (More details coming soon - hopefully). Plus you can check out my home page for current updates. Page Menu: | Introduction | First Part | Second Part | Third Part | Links |
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Brain Injury and Coma
Links
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Coma Recovery Association Page Menu: | Introduction | First Part | Second Part | Third Part | Links |
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