hi I am Sara Stanomior and here is my story,I had symptoms that something was wrong from age ten, including horrible headaches which the doctor's diagnosed as migraines without looking further or running any test. It was only in 2001 when I was seventeen, in the beginning of 12th grade, that I was diagnosed with a brain tumor. I lived in Richmond Virginia, and the doctors said I would lose my vision if they did not do surgery immediately. Do to the location of the tumor, they decided it was too risky to remove the tumor, and instead drained it, which collapsed it.
Unfortunately, the tumor was aggressive, and grew in only a few months’ time, as they had diagnosed it incorrectly. I went to a different surgeon in NYU, who told me that I needed to remove the tumor fully, or it would otherwise cause me to die, but said that there would be many ramifications, including: taking many medications for the rest of my life, due to the surgery destroying my pituitary gland; and that I would get diabetes insipidus, a urinary complication, for which I would have to take medication. The doctor additionally told me that I would have excessive weight gain, due to the surgery destroying the hypothalamus. I had struggled with an eating disorder throughout high school, and due to seeing a nutritionist weekly at that point I had reached a stable weight and was no longer starving myself. Hearing that I would gain weight was the most difficult part of the surgery I could comprehend.
I went into surgery three weeks later, and in that time the tumor moved and wrapped around my optic chiasm, which necessitated the surgeon to scrape it down in order to completely remove the tumor, and as a result I woke up blind. The doctor told my parents that I would regain vision as I healed, and over the next 2 years I regained a small ‘pinhole’ field of vision in my left eye. I am still very much visionally impaired, and learning to navigate the world like this has been a great challenge. I initially was trained to use a seeing cane, but refused to do so due to the stigma involved. It was only after I got hit by a car that I realized that I had no other choice but to use the stick.
Another unexpected ramification from the surgery is that as a result of damage to the frontal lobe I had changes in my personality, executive functioning, and I lost my short term memory. The personality changes were the most difficult for my friends and family; I went from a happy go lucky person to one who was not as happy. This healed over time, although it is something I still struggle with. The executive functioning loss effected the way I planned and thought things through, and this effected the choices I made and how I planned my day. My short term memory loss was devastating; initially, I repeated questions every 5 minutes, but began to retain more as I healed. My surgery was right before graduating high school, and I had a memory that had allowed me to be at the top of my class with minimal studying. Entering into college a year after my surgery was a nightmare; as many times as I studied, I could not remember the material on the tests. It also took me a few years of failing to realize that I could not go my intended medical school path, and had to take a detour and change my goals. I ended up pursing a Bachelor’s in psychology, but due to the initial failures I left college feeling dejected just short of 12 credits from graduating.
I spent the next few years working as a para professional in a school, and with intellectually disabled individuals in a home. I had a friend who mentioned art therapy as a career path, suggesting the combination of psychology and art. Although I was not sure it was a real profession, I looked into it and realized it combined my passions, and most importantly working with people. At that point I went back to Brooklyn College, both to complete the credits I needed to obtain my Bachelor’s, as well as to complete the other classes needed to apply for a Master’s in art therapy. I applied to graduate school, and got in.
Attending graduate school was another hurdle and tremendously affected my self-esteem. I received no accommodations from the school for my disabilities, and at one point the school asked me to leave due to discriminatory causes. At that point I felt so low that I wanted to take my own life. I appealed and was able to complete my Master’s.
I am now working as an art therapist/ psychotherapist at a mental health clinic, in which I see children, adults, and families for a variety of issues. I did not present myself with disabilities when applying to the job, due to the assumptions and discriminations that I have experienced; however, after several months I realized that it was necessary to get special programming to better see the computer screen, and therefore told my supervisors.
Although I can say that I have been able to overcome and have not allowed my disabilities to define me, I still face challenges from the repercussions daily, from my medication, weight gain, or visual impairment. I often experience discrimination due to being overweight, and many people have perceptions that overweight people are lazy or overeat, while for me the opposite is true. I eat very little and exercise often, and even underwent an experimental gastric bypass surgery in order to replicate the effect of the hypothalamus, which was destroyed in the surgery. There are also many perceptions about being visually impaired, I have learned that people do not comprehend the many different kinds of visual impairment, and expect me to be fully blind when using my cane, which initially made me feel pressured to put on a show.
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