Hi. My name is Beth and I'm a twenty-six year survivor of a benign brain stem tumor. I was diagnosed when I was eleven years old, in 1985. I had two operations and radiation treatment at NYU University Hospital. Although I have physical limitations, financial issues, and am years behind my peers I was very lucky that my parents chose the best of the best to treat me. Otherwise, I know, that I would not be here today.
I have numerous side-effects that resulted from all my treatments. My entire left side is not what it used to be. I used to be a gymnast, a dancer, and now I lack sensation in the palm of my hand, my fine motor skills have diminished, my balance is bad, and I have extreme difficulty using my left arm, hand, and fingers. Finally, I was adjusting to what became my life three years after my treatment. I was back at school and adjusted to my new walk. I was done being fearful of walking down the staircase or worrying that kids would unintentionally push me down during the four-minute classroom changes. I was in high school, began making new friends, and finally started to smile again.
At sixteen, my mom decided that we should move to a bigger home in the same town. This was going to be a new start. At least, that's how I thought of it. We could focus on positive things, and not only think about my health. Not long after we moved in, a new nightmare began. I woke up one night in agony. I felt like I was being electrocuted on the left side of my face. The pain was so bad that I punched my left cheek. It didn't help. I didn't squish the pain, like I hoped. The neuro-oncologist told me that I have nerve damage from the radiation treatment and it's called trigeminal neuralgia. When this pain started, in 1990, pain was not studied like it is today and information was not as easy to find. The internet was not a staple in one's daily life, like it is today. For thirteen years my parents and I traveled the United States searching for a treatment for my pain. We went to Philadelphia, California, Massachusetts, etc. I became a guinea pig and was given so many different medications to try. Nothing relieved me from the pain and I developed all of these side effects. I started twitching, trembling, seeing double, and I was in physical and emotional agony. My mom took me to the emergency room at least once a week. At the hospital we waited for hours before I was seen. Not one member of the staff understood my pain and I was treated like a drug addict. No one cared that I was desperate and devastated at how my life was. No one understood how emotionally paralyzed I was. I was afraid to move in fear that the pain would return. I could barely breath. I was so scared. I am so grateful to my mom because she was always there. She was there in the very beginning, offering to shave her head when I was losing my hair, trying to make the summer that I had my radiation treatment similar to a vacation, and taking me to the emergency room at three in the morning and then working full-time, too. She gave me the perfect hug and always allowed me to feel my mental pain. She is such a strong woman and I admire her and love her so much.
Finally, in 2002, I met a pain doctor who not only treats my pain, but he treats me with respect. My pain is finally under control after living in chronic pain through the end of high school, all of college, and for my first couple jobs after graduation. I'm able to breathe a sigh of relief. I can enjoy life again. I can relax, think clearly, and start thinking about my future.
I never once met another benign brain tumor survivor throughout my twenty plus years of surviving, so I was ecstatic when I found a local support group to go to. At the group I was able to meet brain cancer survivors, but not others who had benign tumors. Both kinds are serious and support is needed for both, but they are different battles. I wasn't getting the support I needed at the group and once I heard someone describing a benign brain tumor as "good" I knew this was not for me. My tumor physically limited me, left me in poverty, and ruined my dreams: so this wasn't a "good" tumor.
My mission after that experience was to make a better world for benign brain tumor survivors. I initially started a website for benign brain tumor survivors called It's Just Benign, www.ItsJustBenign.org. The majority of the membership is survivors. It's been incredible watching survivors connect, especially knowing how isolated members felt. The website has 600 plus members all over the globe. That means that there are 600 survivors who can offer support, advice, and encouragement to each other, and 600 experiences from which to learn.
Ten years have passed since my pain is managed properly and my life is improving. I truly never understood how my trigeminal neuralgia affected my life until my pain was finally being treated properly. I lost my childhood and my education, career was impacted, and I'm not like the "traditional" 38 year old. So I may always be a little sad, but life is pretty good now. I work part-time, am hoping to be collecting disability soon, have a nice circle of friends, and keep busy.
It's Just Benign is what excites me most. It is now a 501©(3) nonprofit organization, meaning donations are tax-deductible. It has shifted from only being a website to also educating about how life threatening these "benign" tumors are.
It's still incredible watching someone from South Africa connect with someone in Manhattan on ItsJustBenign.org because they have the same rare benign brain tumor type. However, it is also so fulfilling educating an individual about the quality of life issues survivors deal with.
It's Just Benign has received quite a bit of press and more companies are seeing the benefit of my mission. Check out the press tab on the website to read them.
After suffering & being seriously ill, at 38, my life is finally getting started.
