Hello. My name is Beth and I'm a twenty-eight year survivor of a childhood benign brain stem tumor, a brainstem glioma. I was diagnosed when I was eleven years old, in 1985. I had two operations and radiation treatment at NYU University Hospital. Although life has been difficult because I have physical limitations, financial issues, and am years behind my peers, I realize how lucky I am to be alive today. I would not be here today if my parents didn't choose the best of the best (of that time) to treat me.
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 trample me 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 and no one wanted to treat a child. 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 at 28 years old was finally able to think about my life & 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 almost 1,000 members all over the globe. That means that there are 1,000 survivors who can offer support, advice, and encouragement to each other, and 1,000 experiences from which to learn. It's incredible watching someone from South Africa connect with someone in Manhattan on ItsJustBenign.org because they have the same rare benign brain tumor type or because they both have chronic seizures.
Eleven 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, my career was impacted, and I'm not like the "traditional" 39 year old. So I may always be sad, but life is improving. I work part-time, am collecting disability, have a nice circle of friends, and keep busy. However, it is certainly not the life I imagined. I miss so many things that I can't do. I miss riding a bike, skiing, and roller-skating. My balance is too unsteady. I miss going to concerts of all types and being near loud music. I already lost the hearing in one ear and I have high frequency loss to the other ear (the good ear). I'm not risking the little hearing I have left. I miss wearing sexy high heels and I miss running. My left ankle will give out and I will hurt myself. I miss eye make-up. I have nerve damage to my left eye and I use a ridiculous amount of eye drops. I miss being invited places. I can't go because it's too loud or it involves balance. I miss never feeling in control of my life. I can't between having all these side-effects and not making enough financially to support myself. I miss not having biological children of my own. I miss the life I dreamt of when I was young. I realize there are some things in my life that are good and make me happy but, it is painful to think about what I won't be doing or won't ever have.
For now It's Just Benign (IJB) is what excites me most. It is now a 501©(3) nonprofit organization whose mission is to provide information, support, and a means of communication for those diagnosed with benign brain tumors. It has shifted from only being a website to also educating the community about how life threatening these "benign" brain tumors are. IJB is steadily growing. There is a neurosurgeon as a board advisor, a comedian who provides a Joke of the Month, and many survivors who are help
ing eachother cope with quality of life issues.
After suffering & being seriously ill for almost two decades, my life has finally started and has purpose.
