I walked into the vast Bovard auditorium to a crowd that I did not quite expect. Rows and rows filled with the gray haired, the wrinkled skinned, and the amalgam of canes resting against the armrests. Among this sea of elderly citizens, I sat, feeling like the only youth putting aside basketball games and spirit rivalries to expand my knowledge on the humanities through Visions and Voices.
Despite the vast age differences between myself and the rest of the crowd, I felt that we shared something — the need to help those struggling with Alzheimer's.
The talk also took a different turn than I had expected. Rather than giving us scientific facts and explanations about Alzheimer's, Toga and Genova steered the conversation to how we as a community should deal with the disease. Genova compared Alzheimer's with cancer, noting that whereas cancer is now embraced in our community, with various walkathons and fundraisers, Alzheimer's is still swept under the rug without much thought, compassion, and attention.
"People hate feeling uncomfortable and being with someone who cannot remember as well as you would like them to makes you feel uncomfortable," Genova proclaimed.
Because of this, she went on to argue that these perfectly innocent members of our society are shunned into experiencing loneliness.
To illustrate Genova's point, Toga shared stories about his mother's, aunt's, and grandmother's isolation during their final stages of their Alzheimer's disease.
This message resonated with me. Two years ago, the mother of one my closest friends was diagnosed with early onset Alzheimer's. At age 50, the mind of this brilliant woman, who managed a large division at Microsoft, had begun to erase, leaving my friend Cassie on her own. A 16-year old with two older sisters off in college and her parents divorced, Cassie was left to fight her mother's battle alone. For a year, she kept this to herself, never telling me about it.
In retrospect, I realize that Cassie had divided herself — preserving a joyful façade that masked her grief. Eventually, she told all her friends. Our acceptance of her mother's condition helped her accept her own situation and move on. It was the assurance she received that her mother was not alienated and unloved by the community that inspired her to accept her fate and do what she could to fight it.
In the process of coping, Cassie had encouraged us to read up on the condition, and this was when I introduced myself to the Alzheimer's community and Genova's book Still Alice.
As Genova reiterated during the talk, "Something's Not Right with Alice: Understanding Alzheimer's A Conversation with Lisa Genova and Arthur Toga, Moderated by Ina Jaffe," there are things we can do to avoid Alzheimer's. For example, high cholesterol, type II diabetes, and brain damage in the forms of tumors and concussions all trigger the possibility of getting the diagnosis of Alzheimer's.
The biggest takeaway for me was that Alzheimer's is not a disease of shame. We should embrace it and the people diagnosed with it as we do for other illnesses. In order to spawn this improvement envisioned by scientists and authors, such as Toga and Genova, people of all ages and backgrounds should gain awareness, doing their part to form this international support system.
Reach Staff Reporter Mitali Karmarkar here.