Other Stories from young people and their parents
When you read about the remarkable young people in this section of the TNA website, you'll join us in applauding their courage and remarkable strength. By sharing their journey, they are offering hope to those who have lost it. If you want to send your story, please do so by emailing it here. |
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I am a mother of a sixteen year old daughter who suffers from trigeminal neuralgia and TMJ. An MVD procedure was performed last July without, unfortunately, the success we would have liked. My daughter Lauren has been down an arduous painful road and continues to be hopeful that one day she, like many of the people on this site, will live pain free. Following is a letter that Lauren wrote to me when feeling melancholy and in much pain. In the words of Emerson “the heroic can not be the common, nor the common the heroic” and this rings so vividly true with Lauren and I’m sure with you all that share this unwanted battle; this demon that has crept into all of your lives. Thank God for this website; the support groups and conferences which Lauren looks forward to hopefully attend someday and to even speak at one……. GOD SPEED (Lauren’s personal story in her own words are to follow and forwarded to share with others). Dear Mom: We’ve been through a lot together. You are my best friend and truly my “Patch Adams”. Some may say that it is wrong to have your mom be your best friend. Well, I think in every case, it is different. We’ve been through so much together. You are my confidante, my best pal. Every day is a battle, Mom. Personally, I would love to cut the letters, T<M<N and J right out of the alphabet. But then I think about it, I wouldn’t have “Mom” or “Disney”. Or even my own name. I struggle every day. I struggle to eat, brush my teeth, wash my hair and just live normal. I cry every day. It hurts so damn bad. And yes, Mom, I won’t lie, I have wanted to give up. If it weren’t for you, I don’t know where I’d be. I don’t know how I’d get through each day without you. Without your jokes, or your hands to hold through every test and attack, I don’t know where I’d be. You always taught Julie (her sister) and I to try our best. Well, I always have. I’ve always tried my best at school, and with friendships and now with this. Temporomandibular joint disorder and now Trigeminal Neuralgia. When I have attacks, I feel like millions of knives are stabbing my head. Mom, I had a plan. I wanted to do well in school, get good grades, and maybe make a difference in this world. Some may say this is too ambitious. I wouldn’t. This is the only thing I ever wanted was to follow this dream. Now my dream is just to LIVE…to be in LIGHT…to not have pain. My dream is to laugh again and be me. Sometimes I feel like I am losing myself. When I fell down those stairs at school and couldn’t return, I didn’t understand. But Mom, I never once gave up. I refuse to give up. TN or no TN, I will follow my dreams. Each night I go to bed and think, “I made it. I made it through another day.” Each time I eat or wash my hair, I think I did it. I beat another battle..” For the longest time I didn’t know what I had done wrong. I thought “why am I being punished?” But I realized I couldn’t have done anything. I never bullied or made fun of people. So why? I still don’t know this answer and I guess I never will. Sometimes I go to bed not wanting to wake up, not wanting to go through the same old struggles. It’s hard. The hardest and worst pain ever. I try my best. I just want to breathe, to be a KID and most of all to LAUGH! Thank you Mom for being there. Thank you for holding my hand through every test, every attack and being my “Patch Adams.” I really needed you in the hospital because I was really scared. Thanks for sleeping by my side and being there when I need you the most. I have long journey ahead of me. I will need you. When I get down or have attacks, I try to think of good memories. I think of Christmases, Disney, Julie calling me “bug” (nickname sister gave Lauren since her eyes get dilated when taking meds) and going to see “Beauty and the Beast” on Broadway. You truly understand. Thank you Mom for being there through every test, for understanding and for letting me hold your hand. You’re the best. The very best Mom. Sorry if your ‘thumb’ almost came off a couple of times. (Referring to when Lauren would squeeze my hand/thumb during pain seizures) Love you to the sky and back and much, much more. Love Always Lauren Leigh Lopes Your bug eyed “triple L” kid who’s a true fighter. Sam (not his real name) recently sent TNA a copy of his college application essay. We want to share his courage and spirit with all TN and face pain patients. Below is his history with TN and TNA, followed by his college application essay. Sam's mother first called TNA when he was in intractable pain and on large amounts of Tegretol. We connected her with some other parents whose children had TN and suggested a consultation with Dr. Jannetta. Sam was not even ambulatory when taken to Pittsburgh to see Dr. Jannetta and was becoming jaundiced from the Tegretol. An MVD was performed and it was very involved. The outcome for its success was very dubious and as several post-op days went by Sam showed no improvement in the level of his pain. When he left Pittsburgh he went to the Children's Hospital in Boston where he ended up being fed through a gastric feeding tube as he stated in his essay. TNA didn't hear any further news of his condition for some time . The mother of another boy who also had several MVD's and was finally pain-free, wanted to work with us to do a follow-up on the current status of all the children with TN. At that time we had about 10 children in our database. Each of the parents was called to inquire about the current status of their child's TN. The call to Sam's mother was approached with great concern and the possibility that his condition would not be improved. However, she spoke with joy in her voice as she conveyed the miraculous progress in his recovery that took place over a long period of time. He had been curled up in a fetal position for months with tube feeding and in pain and slowly began to improve. No one could attribute his progress to any specific factor except time. His mother then went on to say that he had the role as the Wizard in the Wizard of OZ. She had at times thought that he would never get better or that they might even lose him during those months in the Boston Hospital. Needless to say her happiness and gratitude knew no limits, both for TNA and Dr. Jannetta. Oddly, the outcome of TNA's contacts with the other parents at that time seemed to show that many of the children having an MVD did not have immediate relief; they seemed to take some time post-op for the pain to stop, even though the surgery had addressed a very evident problem. Sam's TN journey is a source of encouragement for those with children who do not have an immediate relief of pain from their surgery. Sam's College Application Essay On Thanksgiving Day 1996, when I was nine years old, an electric, shock-like, jolting message came to me that spurred my conviction that I will be an outstanding doctor. At the time, I was unaware of the challenges that would face me in the ensuing two years. Although born of adversity, my experience in overcoming the hurdles that awaited me became the foundation for my persistent dedication in pursuing my life goal. Looking back on that turkey dinner today, as I stand upon the threshold of my future, I know it was the beginning of a most positive path. Trigeminal Neuralgia is a neuropathic pain disorder that typically causes suffering in people in excess of seventy years of age. Usually, as a result of hardening of the arteries, the Milan sheath covering the Trigeminal Nerve is worn away, exposing the nerve. This condition triggers the nerve, provoking excruciating facial pain and tics. In my case, the veins in my head took a rare detour, wrapping themselves around the nerves in seven places. I was the second pediatric patient that Doctor Peter Jannetta, the creator of “Micro-Vascular Decompression Surgery” treated. In late January 1997, delirious and confused from shopping local doctors for a diagnosis, I found myself in Dr. Jannetta’s Pittsburgh office. As I looked up from my wheelchair, scanning my surroundings, I observed at least fifteen pairs of suffering eyes, topped with gray brows, looking back at me in awe. They were lining the perimeter of the waiting room, holding their faces and grimacing in pain. I asked myself “What am I doing here?” I spent nearly the next full year in Boston Children’s Hospital, being treated for “Pain Management”. At the time, I thought that these people did not know what they were doing; they could not manage my pain! Blowing bubbles and chewing gum was their strategy to chase away the grimace on my face; drawing pictures and reading storybooks was their idea of school. I asked myself “What am I doing here?” A repercussion of the intense pain that had become my life was the inability to eat. During the three-hour ambulance ride from Boston to home, I contemplated my future. I was thinking about getting back to school, seeing my friends again and playing baseball and football as I once loved doing. At 56 pounds, and having missed all of fourth grade and part of fifth, I looked down at the G-tube that was permanently installed in my stomach and I asked myself “What am I doing here?” In the summer of 1998, as my recovery progressed at home, I missed the laughter that would come from my suffering fellow patients and friends who lived with me in the hospitals. They would have roared at the sight of me wearing a chef’s hat at the stove, preparing my favorite foods for everyone other than me to eat, as my G-tube apparatus pumped nourishment into my frail frame. The doctors and nurses would have died laughing (and crying) at the sight of me starring in my school play wearing an emerald green suit and calling out, “I am the Wizard, the powerful Wizard of OZ.” My parents rolled on the ground in hysterics as I turned and grinned out from under the too-large helmet that I wore on my head as I drove the go-cart they bought me into a brick wall in the back of the Grand Union grocery store. All of a sudden it came clear to me, “So, this is what I am doing here.” I have been blessed with the experiences of suffering, having faith, having hope, recovery and renewal. This blessing has given me the opportunity to develop my self-discipline, determination, ambition, excellent study habits, the love of learning, the need to succeed, and the desire to contribute to the relief of the suffering of others. I am confident that the jolting, painful prod that came to me on that Thanksgiving Day delivered the message: “This is what you are here for.” I have made my highest priorities throughout high school that which would help pave the path for my unstoppable desire to become a Doctor of Medicine. My teammates on my Varsity football team call me “Doc Sam.” During my college visits this past spring and summer, I learned that many students come into their freshman year at college declaring “undecided.” I am not “undecided.” I am going to be an outstanding doctor. |
