Sounds of Love - A Hearing Aid Plea

     It’s always been difficult to tell my story. So many critical events have transpired that it’s hard to sum up everything and every time I tell it, even more details are added. At the age of 21, I was diagnosed with an extremely rare genetic disease called Von Hippel Lindau. Since then, I have had 8 spinal cord, 2 gamma knife radiations, an open cranial on the brain, 2 kidney, 7 eye surgeries, and an inner ear surgery to remove these tumors the disease causes. My ear surgeon said that I would eventually lose my hearing in the left ear. A tumor at the base of my cerebellum caused my spinal fluid to start backing up in my brain. My neurosurgeon had no choice but to implant a VP shunt. It was placed to drain off excess cerebral spinal fluid. It keeps me alive and it will always be a part of me. The tumor at the base of the brain is inoperable because it is too intertwined with other major blood vessels. Removal is not an option. At one point my shunt failed. I almost died as I was rushed to the operating room to replace the shunt.      About 4 years ago, I woke up one day to discover that my eyes and skin were jaundiced. I was immediately was rushed to the ER and it was determined that one of the 20 or more cystic tumors in my pancreas blocked the bile duct not allowing my body to process bodily functions properly. The surgeon had to perform a very risky but necessary surgery called a Whipple. The goal of the procedure was to remove cancer in the head of the pancreas. The procedure was a success, but took a great toll on my body. I now have to take pancreatic enzymes to digest all of my food and now am in danger of developing diabetes.
     When I was diagnosed at the age of 21 (I have been fighting VHL for over 18 years), I fell into a pit of darkness and despair. I thought my life was over and went on a several year binge of drinking, abusing my body, and just not caring about anything anymore. I couldn’t work and had to go on SSI disability. Life was very grim. Then something amazing happened; a series of events that would forever change the course of my life. My friend invited me to a jam band music festival called Hookahville near Columbus, Ohio. The first time was a successful event, so we decided to go again. Then it happened!  At the next Hookahville, we were sitting by our fire at about 4am, a golf cart pulls up with a bunch of musicians in it and out they jumped and started playing a style of music I never heard before.
Instantly, the music grabbed hold of my soul and it is impossible to explain but the music began a process that would continue to grow and grow. That music was Bluegrass and the band the exposed me to the incredible wonders of its sound was Oakhurst.
     The music took away my physical and emotional pain like nothing else I ever experienced. It was that moment, at 4am in the morning on a beautiful summer night, I realized I had everything to live for and my reason for living and enduring these hardships was meant to be. The band played several songs and went on their way and for the first time in over 6 years, I went to sleep with a smile and hope for the future.
     I bought their cds and from that point on, I started listening to them every day. The bluegrass music had an incredible healing effect on my frail body (at this point I had about 9 surgeries). When I heard the music I learned how to dance which released all tension and aches in my body. The power of the banjo, mandolin, and fiddle was inspiring. I was so impressed with Oakhurst’s music; I wrote the band my story, thanking them for the renewed hope and energy their music gave to me.
     Approximately 1 week later, the mandolin player from Oakhurst; Adam Smith, wrote me back thanking me for the kind words and he told me it was people like me who give the band the incredible level of energy and drive to create the music that they play. I was ecstatic! My roommate also really got into Oakhurst and we decided to follow them around when they came to our area on tour. Adam’s message sparked an even greater drive in me and everything became perfectly clear on why I was given this incredibly heavy burden to bear. I realized that it was not a burden but a call-to-arms.
     VHL was disguised in the cleverest of ways. After the music healed me I realized that I had the special gift to put a smile on anyone’s face when they were down and out. My true self emerged THANKS to the power of Oakhurst’s music and Adam’s letter. I became the real me who was trapped by the clutches of the disease.
Over the course of the next few years, we followed Oakhurst and eventually my roommate Dennis and I were no longer fans. We were family to Oakhurst. I was so hungry for Bluegrass and with the help of Adam and other members of the band, I discovered such amazing bands such as Drew Emmitt, which led me to Leftover Salmon. The domino effect was in full motion; Yonder Mountain String band, Railroad Earth, The Infamous Stringer Dusters, you get the picture.
     I was fully immersed in the world of bluegrass and met so many people along the way, telling them my story, encouraging others to push on as I do and helping people and doing things for others without thought of any reward became every essence of my being and I finally realized, even though the disease continues to ravish and chip away at my physical stamina, I beat the disease. VHL had no power over me.
     Over the years, the power of music continued to heal and I felt focused enough to return to school to retrain for a position that complimented my physical limitations. I was able to graduate trade school with a 4.0 GPA earning my associate’s degree in Business Management and Computer Applications. I took a year off and began working at a large bank chain climbing the corporate ladder very quickly. I then decided it was time to push myself even further. I attended Saint Francis University (PA) and graduated with high honors with a GPA of 3.95 in Organizational Leadership. Every few semesters I would have to leave school to undergo surgery. It took me 15 years to obtain my bachelor’s degree but I did it.
     Several weeks after I graduated with my B.A., tragedy and devastation hit in the absolute worst way possible. I lost someone very close to me. He had a terrible accident. He was taken from me and passed away. I was crushed. I was lost. A big chunk of my soul died with him. I didn’t know what to do. My friends and I were all set to go to Hookahville once again, and it was 3 days after his death. I wasn’t going to go but glad I did.       Oakhurst was scheduled to play this festival as well. As usual, I met them while driving around in their golf cart and the lead singer, A.P. Hill had a long talk with me, as well as several others who helped me sort out all of the pain. Oakhurst invited my friends and me backstage that Saturday night and got to watch a very rare display of several musicians from different bands playing together. Everyone helped me prepare for the funeral when I returned.
     Life became very difficult to understand again. Why have I been denied a mother, grandmothers (both passed within 2 years of my mother’s death), good health and even love which was so abruptly taken from me? About 1 week after my friend’s passing, my close friend invited me out to Evergreen, Colorado to get away from the pain and clear my head to sort things out. It took about 5 seconds to say yes. I drove out to stay for a month and once again, the power of bluegrass, friendship, and the will to fight on cleared my head to go on with my life.  Adam Smith also lives in Denver, Colorado; I was able to spend a lot of time with the man who I consider my hero. There were many factors that helped me learn to beat the disease, but Adam initiated everything and I am forever in his debt. He is my mentor, friend, and brother. I was also able to get to know his fiancée Sarah, who is equally as kind, warm, and truly special person.
     Now we fast forward to this passing year. My neurosurgeon removed another spinal tumor and I was out of the hospital in only 2 days. I thought this was a cake walk but soon I would learn the grievous error of my assumption. Several days later, I started having terrible feelings in my legs. Throughout the night, I could feel less and less in my legs until I lost most feeling and could not stand up. I had to crawl around in my house and my father rushed me to the ER. After several tests, my neurosurgeon discovered that I had so much swelling, the nerves could not send their signals to each othe. He put me on a hardcore regimen of anti-inflammatory steroids. Fortunately, I regained my ability to walk within 48 hrs and returned home to finish healing.
     Several days later, I was set to go to the neighbors (another critical group of individuals, the Kennedys who in a sense helped raise me) for a relaxing afternoon of listening to their band play music. I was in my room, getting ready when I noticed a large pool of clear liquid on the floor. It was sticky and quickly had me wondering where it came from. To my horror, I touched the back of my shirt and it was soaked. I went to my father for him to examine and he discovered the fluid was pouring out of my recent incision. Again, he quickly drove me to the ER and this time the diagnosis was severe infection. The doctors were extremely worried that the infection could quickly spread into my spinal column so I was put on the most powerful antibiotics they had. Before I left the hospital, I was given a pic line (a semi permanent IV port for long term use) because I had to continue the antibiotics for 6 weeks. Having to take this medicine 3 times a day through an IV for such a long period of time was rough on the body but a necessity. I thought I was out of the woods but tragedy struck again.
     One night I went to bed when about an hour later, my father heard a big thud coming from the hallway. He found me face up in the hallway. Apparently I sleepwalked for the first time and my legs decided to give out, causing me to fall, hitting the back of my head on the wooden floor. The next day I woke up to extreme pain in my head along with a muffled sound originating from my left ear. I hadn’t remembered any events from the previous night and having enough of the hospital, I hoped this would clear up on its own. By the next day, I was in such pain, yet another trip to the ER was necessary. A CT scan quickly solved what had happened. I suffered from a brain contusion (bruising of the brain). The doctors kept me under strict observation and fortunately the bruising did not hemorrhage and I returned home to heal once again.
     About a month after the contusion, my neurosurgeon scanned me again and was happy with the results. More damage was done though than previously anticipated. I kept getting headaches and was having increased difficulty interpreting what people were saying to me. At this point, I decided to make an appointment with my doctor who proceded to order a hearing test. The results were incredibly heartbreaking. I had severe damage to my auditory nerve which was causing my hearing difficulties. I required a bi-cross hearing aid which was different than your standard model. The audiologist explained to me that no matter how loud a sound was made, my brain would not process the sound correctly. This hearing aid, placed in both ears, sends sounds from the left to the right ear. (picture at top). When I asked if my insurance would cover the hearing aid, the audiologist said that most insurances (including mine), would not cover the price of the hearing aid which is approximately $3500.
     On February 7, I have an appointment with my ear surgeon at UPMC, Pittsburgh. Because of the constant headaches and pain that still occurs in my left ear, I can almost guarantee he will want to shut down my left ear. This route was presented to me by him approximately 8 years ago after I had my ear surgery. He said eventually that this procedure would need to be done which is why obtaining this hearing aid is critical to my overall well being.
     As a permanently disabled individual now, the realization of obtaining this hearing aid is far beyond my reach. Never again will I be able to fully enjoy the sounds of life or the music that has become such a critical part of who I am. I have always strived to be a self sufficient person but this goal cannot be reached alone. For the first time in my life I am reaching out to my friends, family, and the goodwill of the people that they are close to for help in this endeavor. I can’t imagine a life where I can only hear half of what life has to offer.
     Presently, I still have several cancerous tumors in my kidney (which will be monitored until they grow to a certain size), tumors in my spinal cord, tons of cystic tumors in my pancreas, and the very troublesome tumor at the base of my cerebellum. My specialists say ultimately there is a great possibility for becoming Para or Quadra-pelagic, and finally my suffering will eventually end. My mother was Quadra-pelagic and passed away when I was very young at the age of 8. She was 34 and I am now 39. The advances in technology, especially the MRI, have given me a greater chance to live longer through regular checkups and intervention. There is no time frame for these issues. It could be in a year, 5 years, or several weeks from now. The disease has no rhyme nor reason for the growth of the tumors and that is why it is so detrimental and has become an incredible burden both physically and mentally to bear.   Fortunately life has given me the tools to navigate this path; friends, family, and of course, the music. With the current situation I face though, I may never be able to hear the same way again. There is a solution and there is hope. With your assistance, this pipe dream may in fact become a reality.
     Since VHL is such a rare disease, there is little funding for research and the only solution for the disease is to remove the tumors when they start causing symptoms. If the goal of $3500 is reached, any leftover funds will be donated to the VHL Family Alliance. This is the only organization that is dedicated to the research and advancement of treatments for VHL. Please join me in this effort to bring hearing; the sounds of love, back into my life and restore a part of me that has been lost. Thank you all for the help in this endeavor.