Being diagnosed with a meningioma brain tumor has had its share of setbacks and obstacles, but it has also enriched my life in ways too numerous to count. It's also led me to meeting some remarkable people aka my second family with this disease as well. With so much focus on the patient, it's not uncommon for the caregivers who play a starring role in our recoveries to be overlooked or get short shift.
Earlier this year, I had the pleasure of meeting Ann Margaret, a meningioma survivor and her entire family including her bright, mature and sensitive 12-year-old daughter, Nicole.
Nicole's grasp of her mother's meningioma journey, wisdom and writing talent are far beyond her 12 years. She has beautifully captured and articulated what is difficult even for meningioma survivors to put into words. Remarkable to say the least.
I dedicate today's post to Nicole who is already imparting life lessons we can all grow from.
My Act Of Kindness: “Born in the Scientific Purple”- George Howard Darwin
By Nicole Chrisney
A plastic purple bracelet, it may not mean anything to most people, but to me it means the world. Last year my mom was diagnosed with a meningioma, which is a brain tumor that is in the meninges tissue that surrounds the brain. When they found the tumor, her neurologist informed my mom that it must be removed. So she chose an amazing and talented doctor and on September 9th, 2008 he successfully removed her tumor.
September 9th, 2008 is also when those plastic purple bracelets arrived at our doorstep. It is also the month that I studied the brain in my science class, and without that class I wouldn’t have been able to support my mom the way that I did. Anyway, those bracelets come from a website called www.meningiomamommas.org It is a website that helps and supports people who have and have had meningiomas and raises money for brain tumor research. The bracelets are used to spread awareness and support the cause.
For my act of kindness, I chose to give my purple bracelet to my 6th grade science teacher. The bracelet is very important to me because it reminds me of what has happened and the long road I am traveling on. I think that my family gives me my deepest satisfaction, so I chose to give my bracelet away as a symbol of spreading my story. This past year, I figured out how fast things can change and how quickly things and people can disappear. I want people to know what has happened to my family and I, and also teach them what I have learned.
I gave the bracelet to Mrs. Ulsh, because she helped and supported me so much throughout the whole process, just like Meningioma Mommas helped my mom. During my studies with her, I learned so much and even figured out something that was important to tell the doctor before he operated. We learned about which nerves from the body connected to the brain. I tried to figure out exactly where my mom’s tumor was located. Then i figured out that the pain my mom was having in her right shoulder and hip was originating from her tumor on the left side of her head. After surgery, my mom’s neurosurgeon explained that her tumor was entangled in a nerve that runs down to her arm and leg. He thanked me for helping him, and I was extremely proud of myself that I could help and that Mrs. Ulsh taught me that.
Mrs. Ulsh was ecstatic when I gave her my bracelet and claimed that she would wear it all the time. It is my hope that with the bracelet she can spread awareness and I also hope it inspires her to teach her students even more about brain diseases and tumors. I dream that my purple bracelet will carry my story for generations and that it helps lead to a cure for people with brain tumors. Since my mother’s surgery, I have conducted a bake sale and have raised lots of money, with the hope that every one of my dollars helps in the effort to find a cure. My purple bracelet will live in my heart forever, and someday my story will lie in the hearts of many people.
Now, a year later, only little scraps of the tumor are left in one of my mom’s bones. You can barely see her scar, and the scar tissue inside of her brain is disappearing quickly. Last year was a year that really made me realize just how precious life is and how quickly things can change. That little plastic purple bracelet meant support for my mom and hopefully brings greater clarity for others with meningiomas and will one day lead to an understanding of the causes for meningiomas and a cure.
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