I mentioned the day that I received the results of my genetic test in my first column. It was a Friday. I had been told to make plans for that day, because not knowing what you’re going to do can contribute to stress. However, I didn’t arrange anything, partly because I don’t like being told what to do and I had no idea how I was going to react to the results.
Correction: I had one plan. I wanted to eat at Qdoba. I had a 2 p.m. appointment at Beth Israel in Boston, which is within walking distance of my favorite outlet of the Mexican restaurant chain. My friends agreed to eat with me afterward. Now, I adore dining at Qdoba and wanted to save my appetite for when I got there, so that day I accepted that I would be eating at 3 p.m., a far cry from my usual 1 p.m. lunchtime.
I took a Lyft from my sorority at about 1:30 p.m. with four of my closest friends to Beth Israel. One friend is adept at following hospital signs, so she led the way to the social worker’s office once we’d arrived. I checked in while my friends found seats. They are not a quiet bunch, and another woman in the waiting room looked unhappy with their loud conversations about the upcoming weekend and school-related complaints. I would usually be uncomfortable at making a spectacle in public, but I was grateful for the distraction. My friends’ high spirits kept me grounded while inside I was flipping between feeling hopeful and resigned about the news that I had expected my entire life.
Eventually, the social worker came to get me and asked if all of my friends were accompanying me, considering it might be a bit tight. I didn’t want to offend anyone by asking someone to stay behind, so I responded that we could squish.
On the walk to the office, I remember one friend asking if anyone knew the hospital’s Wi-Fi password. I felt a small spark of happiness at this relaxed question. Looking back, I realize that it was probably because she was in charge of calling my parents and needed a better connection.
We walked into a room full of somber faces that told me the results before anyone spoke. All the hope I had been holding onto died at that moment. I felt sad and heartbroken, but the news didn’t hurt as much as when my mom told me that she had Huntington’s. The genetic counselor asked how I was, and while I felt sad, my overwhelming feeling was hunger. So I replied that I was hungry.
Getting my results has meant so much, yet so little at the same time. On one hand, nothing in my life changed. I still had to find an apartment and finish my degree. I was due to start a new job the following July. On the other hand, it felt that a part of my future was defined. I eventually will have to deal with this result. I hope that, by then, treatments for Huntington’s will exist. But I refuse to allow my life to be disrupted in the short term.
After we left the medical center, we went to Qdoba, and the food was as delicious as I had anticipated. I spent the day behaving as I normally would: I binged Netflix with a friend, attended an event that served free food, and went to see the new “Avengers” movie.
I was not going to live differently — except for starting to write a column for BioNews Services. Nothing else in my life changed that day. I’m still close with my four amazing friends who accompanied me to the appointment. I found an apartment and started my job. I know that my life will be significantly altered by my diagnosis someday — but not today.
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