Christine Clawley

I contracted NF in February 2008. I am now 27, healthy, and have had some time to look back over what I had written a few years ago and share it with you. Thanks for your website, it was a valuable resource to me while I was going through recovery. Let me know if you need anything else. And thanks for all you do! Christine Prior to February 18, 2008, I led a healthy, busy life filled with dreams and hope for my future. I had graduated from college just a little over a year ago and decided to stay in beautiful Boulder, Colorado and work a year or two before I went back for grad school. Ironically, I have been pretty health conscious my whole life—vegetarian, runner, yoga—and was working for a local holistic and healthy living magazine. I had just transitioned from the Colorado Daily to this new job and my insurance benefits had not been activated yet. (Also very ironic that the only 2 weeks in my life that I'm without insurance and I get NF!) A lot of people had been out sick from work and the previous week I had to take my roommate to the hospital when he passed out from a bad case of pneumonia. So, when I came down with the flu, I didn't think much of it until the 6th day. I woke up that morning feeling even worse than the day before and called in sick to work again. I could not imagine why I was not getting any better and that's when I began to realize that something was really wrong. The pain became unbearable and I had my roommate take me to the ER. I had to pay $600 upfront to be seen, because I was uninsured. I told them about my roommate having pneumonia the week before (he had had excellent care and stayed for 2 days in the hospital), but the nurses and doctors did not seem to take me very seriously and made me feel embarrassed for even coming to the hospital these symptoms. They ran a flu and strep test, gave me some ibuprofen and sent me home. I asked if there was anything else that could be wrong for me and they reassured me that I was fine. They informed me that I owed another $600 for the tests. I paid up and had no choice but to go home. In fact, the test revealed I didn't even have the flu! Of course—it was all in my head! I am still a little bitter about my treatment at that hospital. When I got home to my apartment, I was so scared and depressed that the hospital could not help me. I called my dad and told him, "Please come pick me up so I don't have to die in this place." I am not sure if he believed me or understood how much pain I was in, but he did pick me up and took me back home to Colorado Springs. I threw up several times during the car ride home, and when I finally made it home I did not know how long I would make it. I was in such excruciating pain, had not eaten in 6 days, and my throat was in terrible pain—so that I could not swallow or chew. Two more days passed before I finally made it to a hospital. I honestly, don't know how I survived two more days, and those two days were such a blur to me. I remember slowly entering another state of consciousness for the next couple of days. I heard my sister arguing with my parents over something trivial and thought to myself, "They simply have no idea what world I am living in now and they may not realize until it is too late." It is a terribly frightening thing to know that you are dying and that you are unable to convince your loved ones that this is the case. I tried and tried to communicate this to them, but I had just been seen by a doctor and what else could be done. Perhaps, if I had had insurance, they would have taken me to hospital sooner? I don't blame them, but it does make you think about the healthcare industry and why we have a system that basically states someone who does not have healthcare does not deserve to live. Simply because they don't have money, they don't have a right to life. I had not eaten in over a week and my parents tried to feed me soup and smoothies, but nothing would go down, let alone stay down. I remember being in such horrible, unbearable pain for the next couple of days. This period was actually the most terrifying for me, because I did not know how I was going to die. I was becoming very delirious, but I began to think about my life. I began feeling grateful for my entire life, but thought about what I would miss out on if I died now. Places I had never seen, people I would never meet, and love that I would never experience. Literally, the only two things that kept me going were my cat and the fact that I could still feel the energy in my hands. My cat, Marcel, was the only one that seemed to understand how sick I was. He was so comforting to me and I felt as if he was my last link to the physical world. As long as he lay there on my stomach, I could focus on something else beside the pain. I very well may have died if he hadn't have been with me, for I was losing touch with normal consciousness and had trouble determining whether I was still alive and in my body. The second thing or thought, rather, that kept me going was that I had to learn how to properly heal with my hands. I don't know why I clung so determinedly to this thought, but I felt I was wasting my ability and was certain in the belief that I could have helped myself (as well as others) if I had learned this. I kept returning to my hands and noticed that even though I was in as much pain as I was that my hands were still clean. I could still feel my own energy and vibration in my hands; it was the only part of my body that wasn't sick and as long as I felt this subtle pulse of light in my hands, I knew I could still make it a little longer. Still, I was waiting. All I could do was wait for death to engulf me. On Sunday, a raised and reddish ring formed around my neck. The skin swelled and was sensitive to any kind of touch, even from a slight brush of a hand. The ring began to move rapidly down to my chest and went further and further down within a period of a couple of hours. I was in complete disgust, horror, and terror of what was happening to my body. I showed my mother how it progressed down my body and she thought that it was probably a good thing that it was at least moving. She reasoned that it was my body trying to cleanse itself. My throat had been hurting so bad that she thought I would experience relief that if it moved down to my chest. She simply didn't know. Sunday evening came and the pain did not ease up even for a minute. Suddenly, I was short of breath. I could not take in enough air and my heart rate shot up. I was terrified. "This is it," I thought to myself "I am dying now." I called to mom and she called the family doctor and got a hold of the nurse. My mother took my pulse which was up to 130 then 140. The nurse said, "She's in septic shock. Take her to the E.R." Two of the last things I remember was trying to look up to see if my insurance had been activated. I had already spent $1,200 on my last visit and my parents did not have the money to cover a huge expense from a hospital visit. I was unsuccessful, and we finally gave up and they took me in. I remember losing consciousness on the way to the hospital. Later, I would learn that my lung had collapsed. I was to go in for a simple tracheotomy, but when the Doctors cut in, dead flesh spilled out of my neck. They knew they were dealing with something else entirely. I was admitted with sepsis, pneumothorax, and necrotizing fasciitis. I have to stop here and say that I owe my life to the doctors and nurses at Memorial Hospital in Colorado Springs. They immediately admitted me into the ER, without insurance and they gave me absolute, very best care that they could possible offer. They acted quickly with my condition, did not waste any time, performed all the appropriate tests to diagnose, and immediately performed surgery. I had about nine surgeries on my neck and chest. At one point, they just left my chest open with the wound vac. I had tubes in my chest to constantly suck out necrotizing substances and had to pump blood into me constantly. I was treated in the hyperbaric chamber (I also remember dreaming about this while in the coma—I could feel the strange sensation of lots of pressure). And they had to pump my body with over 20 lbs of fluid to keep my blood pressure up. According to my family, I looked like the dough boy—which would have been funny if they knew I was going to be okay. They fought for my life every day, even though my chances of survival were slim. Every day, they told my parents I had a 50/50 chance of survival. However, when I finally awoke, one Doctor told me that I really had a 1% chance of surviving. I was constantly being monitored 24 hours a day until I woke up after a month of being in an induced coma. Every day, they told my parents, she made it through this surgery or this incident, but her liver my fail, or her kidneys may go out, or this may happen. There were many, many things that could or should have gone wrong but didn't. I had several dreams that reflected what was going on in my waking life—for example, that my body was being mutilated and ripped apart. Because doctors now prescribe a drug that makes you forget, I did not fully understand what happened to me until the third day after being fully brought to consciousness. I remember seeing my family at my bedside and wondering why they were crying. I was so happy to be awake and once I learned what happened, I felt so incredibly happy to be alive. I also remember feeling my grandmother's presence (who had passed a few months prior) and being inspired by her courage. Although I was happy for the time, I would have to overcome many difficult times for the next month I spent in the hospital. I had to learn how to breath again, which was a long and difficult process. I even experienced congestive heart failure while transitioning from the CPAP to Traech Collar. I could not eat or drink and I was not tolerating the food that I was being fed. Turns out, the feeding tube had slipped out of my stomach, which explained why I got so sick every time I was given ANYTHING. I actually lost over 50 lbs from my hospital visit (I am already a very thin girl, so this brought me down to 80 lbs) and I had to work hard to gain every ounce of fat and muscle back. I eventually had to get a feeding tube inserted into my stomach for nutrition. It was even more difficult learning how to eat again. My vocal cords had atrophied and I ran the risk of food or liquid dripping into my lungs and causing pneumonia. I had to relearn how to move my hands, arms, walk, etc. A simple thing like going to the bathroom on my own without assistance was a huge accomplishment. I remember the first day I got to walk again, the first day I got to go outside. I remember how hard it was to just sit in a chair for a few minutes and how I would struggle for breath. I remember being afraid that I would stop breathing if I fell asleep, because my lungs were so weak. But every day I kept going and my family was there visiting me everyday. I had good days and bad days, but there was a little bit of improvement every day. I was finally discharged from the hospital on April 11th 2008 and was so happy to go home. I gained more strength day by day. I was able to walk a little farther than the day before, and I began eating solid food after a couple of weeks. My voice which was only a whisper at first was also getter a little better every day. I thought I was making good progress, and then my hair started falling out by the clumps. This was very traumatic as I was just beginning to look more normal and gain some weight, when all of the medication I had been on finally caught up to me. I did not lose all of it, but I lost most of it and had only a few inches length. Once my hair grew back, I saw it as being symbolic the process I had just passed through, death of my old self and the beginning of something new. I would never have cut my hair so short, but at least I was able to have that experience and try something different. This whole experience has forced to me to look at life differently. Sometimes, I almost think it was easier dealing with life in that hospital and facing the terror of death in that hospital room than facing the whole world as it is. I felt different before this illness and now I feel even more different. Before this, I was a young girl trying to find my way and carve my own niche in the world and now that I've mostly recovered I'm finding myself trying to do the same thing as before. I'm still trying to find my place in the world—and constantly ask myself how I can still be myself and unique while contributing to society and interacting with the world. Sometimes focusing on my body and being grateful for my body helps me get through each day. I find the simple things like running, dancing, and yoga all make me truly happy to be alive. I'm amazed that I'm still able to do all the positions I was able to do before (which s a big deal, because they didn't know whether I would even be able to hold my head up straight). My voice is still fairly weak and my left vocal cord may still be paralyzed. I had an injection in my vocal cord to improve my voice, but I have come to accept that I won't be doing any more karaoke. I still love to sing, but the voice I had before is simply gone. It has taken some time to gain distance from the event. The most difficult part is learning to cope emotionally with what has happened. It's difficult, because people no longer view you in the same way. Some feel pity, others fear, and some respect. For a long time, I feared other's reactions to my scars. I wore scarfs and covered them, but now they have become a part of me. After some time, you become stronger in yourself and you begin to be comfortable with any kind of reaction. I told my family that it feels as if I have relived all the phases of life. At first a sleeping infant, unaware of who or where she is, but senses distress from the unending dreamtime. Then a baby, unable to eat, breath, talk, move without the help of others. Then, when I moved home with my parents, I found myself reliving my teenage rebellion years. (Haha, I had not had hormones for several months and the onset was pretty difficult for my family to endure!) And as I reflected on this, I realized that I never really moved passed this level of development. I was still unappreciative, fearful about survival, wanting independence but having to humble myself to still accept help and assistance. This was one of the most humbling things for someone such as myself which such an overly independent attitude. I'm still growing, still evolving, but I'm just doing it at my own pace now. There are things about myself that I am discovering and I just hope my life unfolds with such grace, that I'll never worry again about anything that is not really important—like other's looks, criticisms, or money. I do think I know myself a little better and I'm growing to love myself a little more because I've lost the will to please everyone. I've lost the will to conform and pretend. I could not fit into a clear mold before and now there's simply no chance in hell that I can. I feel liberated in a way, freed from the pressure to become. And I'll keep dreaming and listening to my quiet soul in blissful sleep. *For those open to metaphysics and psychic phenomena, please read on. I have had precognitive and lucid dreams for most of my life, but had not taken it as seriously as I should have until this experience. In the months leading up to my illness, I had several dreams involving an object in my throat and strangulation. I had one particular dream where a mentor of mine was pointing to my throat. My body was etheric and not solid—she then reached into my light body and removed a tumor/cyst from my throat. She did it with such gentleness and I was very grateful. In the dream, I could physically feel the tumor being pulled out. I wondered at the time, whether they had anything to do with actual reality, but brushed it aside. The next dream haunted me at least four or five times up to 6 in the months prior to be hospitalized. I was continually haunted by the same dark figure at night. I would be dreaming and as soon as I would begin to become more conscious within my dream, I began to see her face more clearly and what she was doing to me. She was Native American woman was sitting on top of me and strangling me with an incredible rage that I never knew existed. Every time, I woke up from the dream, I felt her energy and hands still around my neck, which really terrified me. I had never had such a realistic dream before. During this time, I was also working with a life coach/counselor, who was also psychic, for career advice. As soon as I walked into the room, she began feeling her own neck and said, "Christine, what is going on with your throat?" Before I could really answer, she said, "You were strangled in your most recent past life and it is somehow manifesting again." I had not said a word to her about my dreams prior to this, so I was very shocked. In retrospect, I wish I had paid more attention to these dreams and my friend's words. Somehow, my subconscious mind was trying to warn me to pay attention to my health, particularly my throat. I wish I had not tried ignoring these dreams and had done more to really listen and be proactive. Perhaps though, in the end, everything that happened had to happen. It certainly helped me grow and develop inner strength and will. And it also made me realize that the mind, body, and spirit are intricately connected.