By now, with 4 weeks left of my preclinical life, it’s become ingrained in me how to process diseases in my head. You learn the cause of the disease, you learn
the symptoms, what it looks like on gross and histology, the sequelae, and the treatment (if it exists). Rinse, lather, and repeat.
I guess I always kind of knew that I was missing the patient experience of the disease, but I never really knew what exactly I was missing, until we finally learned
about
Amyotrophic Lateral Sclerosis
. My grandma died of this when I was 12 (just around this time of year), and it’s really one of the few personal experiences I’ve had with disease.
It’s kind of an ironic point to hilite-medical students, for the most part, have all been pretty healthy growing up. When we talk about treatments like surgery
or chemotherapy, or what
rounding
in a hospital is like, our only knowledge is what we see on TV, or any shadowing experiences we’ve had.
It was amazing to me that a disease that affected me so profoundly–ALS–could be boiled down to about a page in my pathology book, and 3 minutes in class.
I wanted to stop the lecturer and tell my grandma’s story. Tell my classmates about the pain of seeing my grandmother whither away, first moving from her big
house on a hill to a retirement facility where we played pool and ate chocolate mints, then losing her ability to walk and moving to a nursing home shared with
Alzheimer’s Adele, and finally to her own room where she lay in her bed and struggled to point at letters on a plastic board after she’d lost her ability
to speak. I wanted to tell them about how much it scared me when she would choke on her food, and my mom or a nurse had to put the suction tube down her throat so she
could keep living for another month or two, or that I cried in her bathroom when she was about to die and my neighbor took me and my brother home. And I wanted to
tell them about the little things that made us all laugh, and the antique Candyland game her brother sent her; one she used to play when they were kids.
And then I think how many diseases I’ve already learned (and forgotten), and how I really don’t know anything about them. I know if it’s a virus or
an antibody or a cancer that causes them, but I don’t know how they make the patient feel. Sad? Frustrated? Confused? Guilty?
I guess it’s a little frustrating that we don’t ever think about these things during our classtime, but then again, I don’t think it’s
something you could ever really teach a person. Either they care or they don’t. You can teach them how to go through the motions–ask the right questions,
provide a “caring” touch on command, give eye contact and nod affirmingly–but if it isn’t genuine, they’ll see right through you.
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