My name is Beth and I'm a 35-year survivor of a childhood benign brain stem tumor, a Brainstem Glioma. I was diagnosed when I was 11 years old, in 1985. I had two operations and radiation treatment at NYU University Hospital. Since then, I've been on the challenging road to recovery. My journey has been extremely difficult; even after all the years that have passed.
I battle physical limitations, financial issues, and social issues, but I realize how miraculous it is that I'm alive. I would not be alive today if my parents didn't choose the best neurosurgeon (in 1985) in the tri-state area to treat me. I can breathe, eat and walk on my own: thanks Dr. Epstein!
The numerous side-effects resulting from all my treatments compile an alarming list. As a child, I was a gymnast and a dancer. But those joyful days of cartwheels, backbends, and jazz dancing are a memory of my former self. After the surgery, I woke up to a left side that was no longer functioning "normally." I no longer have sensation in the palm of my left hand or foot, my fine motor skills and coordination have diminished, and I have extreme difficulty using my left arm, hand, fingers, and my left leg and foot aren't steady. I also lost all the hearing in my left ear and a hearing aid won't help. I had at-home therapy that was recommended at that time, but the exercises given were too advanced for my abilities and didn't help me at all. However, three years after my treatment I was adjusting to what became my new normal. I was back at school and adjusting to my new walking style. I was done being fearful of falling down the staircase or worrying that kids would unintentionally trample me during the four-minute classroom changes. I was in high school and I began making new friends; and I finally started to smile again.
At age 16, 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. I felt this unimaginable pain. 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. Information was not as easy to find, and no one wanted to treat a child. The Internet was not around, like it is today. I didn't feel like any specialist cared about me, the 16-year-old girl who was suffering.
For 13 years my parents and I traveled the United States searching for a treatment for my pain. We went to Philadelphia, California, Massachusetts, among other locations. I became a guinea pig and was given so many different medications to try. Nothing relieved me from the pain, and I developed even more side effects. I started twitching, trembling, seeing double, and I was in physical and emotional agony. I also had two procedures to sever the nerve and they not only didn't work, but my cornea was damaged, and I almost was permanently blind in my left eye. My mom took me to the emergency room at least once a week for the pain. We waited for hours before I was seen at the hospital. 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 from the pain. I was afraid to move or breathe in fear that the pain would return. I was just terrified. 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 hugs 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 doctor who not only treated my pain, but he treated me with respect. My pain was 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 was able to breathe a sigh of relief. I started to enjoy life again. I could relax, think clearly, and at 28 years old was finally able to think about my life and future.
I never once met another benign brain tumor survivor throughout my 20+ 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 brain tumors. Both kinds are serious, and support is needed for both, but they are different battles. Benign brain tumors and the journey is a completely different path, compared to those diagnosed with malignant brain tumor. I knew this group was not for me once I heard someone describing a benign brain tumor as "the good kind" and no one corrected him. My tumor physically limited me, left me in poverty, and ruined my dreams: so, this wasn't a "good" tumor. I couldn't understand why no one spoke up. Was missing the very important 6th-grade Valentine's dance ok? No. It was so painful moving down from the accelerated levels to the "normal" level 2s. I also couldn't continue with my education and had to start collecting disability, which would be difficult for anyone. However, it was such a blow to my ego because my parents both have their PhD's and everyone is well educated in my family.
My mission after that experience was to make a better world for benign brain tumor survivors. I started a 501(c)3 nonprofit and website for benign brain tumor survivors called It's Just Benign (IJB), www.ItsJustBenign.org. Most of the membership on the website was compiled of survivors and a few loved ones. It's been incredible watching survivors connect, especially knowing how isolated members felt. The website had almost 1,700 members from all over the globe including Canada, France, Belgium, and Indonesia! That means that there were 1,700 survivors who could offer support, advice, and encouragement to each other, and 1,700 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. I've personally met survivors from Texas, Massachusetts and one in France.
Eventually www.ItsJustBenign.org needed to be updated. The new site looks great, it's much more secure, and members can still contact each other, but I don't know how to manage it yet. Therefore, I can't change articles, etc. I'm just not a technology person, so I'll be taking some classes so I can manage it and finally share the vision I have for IJB.
I truly never understood how my benign, or non-malignant, brain tumor affected my life until the last decade. I lost my childhood; and my education, my career and my emotional development were all significantly impacted. Therefore, I'm not like the "traditional" 46-year-old. I work part-time, am collecting federal 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, and I miss feeling free and in control of my life. I miss not having to think before I act. Do I have my hearing aid and my ear plugs? Do I have my medicine? Did I use my eyedrops? I miss the possibility of having biological children. I miss the life I dreamt of when I was young.
My health has also had a significant impact on my mom. She was a single mother and was always there for me. My mom was traumatized by the pain I felt from the Trigeminal Neuralgia and she was always taking me to the Emergency Room. I know that this wasn't my fault, but this is a sad feeling to live with. I also couldn't be there for my mom the way I would have liked because I was in such physical pain from how I compensated these last 35 years. She was so good to me and I couldn't give nearly as much back because I was concerned that I wouldn't be able to walk and would eventually die if I didn't focus on me. My mom passed away in January of 2019. Although we talked daily, I gave her many smooches and saw her weekly, the grief over my mom taking care of my health and then her own, just makes my heart break. She didn't have the support and I wish I could have been there for my mom more.
I've been trying to get help for my bad balance since 1997, when I saw my first big physical therapy department at a local hospital. I've been observed and followed by neurosurgeons, neurologists, physiatrists, and have seen countless other doctors and everyone made comments on my movements and balance, but not one doctor in these last 34 years ever tried seeing the whole person. All the therapy I've had was a waste of time, money and energy because I was being given exercises that were too difficult for me. No one made suggestions to get a gait analysis and no one was concerned that my good side would become my bad side because of how I compensate. Not any of these doctors with good credentials who worked at well-known hospitals gave my long-term health a thought. And I've learned that this is a pattern where a patient has a complicated medical history.
Due mainly to this neglect by medical professionals, I had to have foot surgery. I'm just glad that I had someone advocating for me and that someone finally understood how much I compensated by using my right leg/foot and how unsteady I really am on my left foot. I'm finally getting the care I need after 35 years of surviving this diagnosis. I'm grateful to the surgeon, physical therapist and phsyiatrist that helped me and also allowed me to see that I'm not crazy. My concerns were validated.
I wouldn't be able to share my experience with you if it wasn't for my mom's love, hugs, concern and reliability. She sacrificed so much of herself to make sure I was happy and getting the medical care I thought was best. It breaks my heart that she won't get to see me at my healthiest.
Dedicated and in loving memory, to Dr. Judith Wolder Rosenthal. â€¦My hero, friend and "favorite person in the world".