37 Narrative Ethnography

The trap of feeling invincible
I always loved building things. Laying bricks, digging, drilling, any type of construction. At the
end of May 2015 I noticed my balance was off. It felt like someone was pushing me from behind
and I kept falling. I went to the doctor and they immediately referred me to the neurologist, two
buildings down. They conducted some tests and said they would call me with results. Soon after
leaving the neurologist, I received the biggest shock of my life: there was a tumor in my brain
and I would need surgery as soon as possible.
On August 10th, my wife and two of my children came to the hospital. Going into this surgery, I
was prepared for the worst. Even though I was 72 at the time, overall in good health, my doctor
warned me it was a dangerous tumor. There were three possible outcomes: partial facial
paralysis, full body paralysis, or if they hit a blood vessel, death. Knowing this, those eight and a
half hours in surgery must have felt like a lifetime for my family. Luckily, the doctor was able to
remove 90% of the tumor and I came out of the surgery with partial facial paralysis, which was
supposed to go away within a couple of months. I also suffered from hearing loss, complete
deafness in my left ear. Still, I was the only patient of about 15 others on that floor to have gotten
out of surgery and been able to speak. The man I shared a room with, for instance, also had
surgery on a tumor, not exactly similar to mine but a tumor nonetheless. He couldn’t talk, walk,
or eat. I thank God for how well my outcome was after that first surgery.
The road to recovery began. I went to the hospital three times a week for physical therapy.
Physically, It helped me increase my coordination and gain back some strength. Mentally, I
realized I still had some power, I was cognitively intact. Emotionally, I realized I was not a
moron; this surgery didn’t strip me of everything. I felt good inside and was still capable of
certain tasks.
Fast forward to 2020, my fears become reality and my symptoms start coming back. I had moved
away from the city by this time, so that meant a new doctor and a new hospital. I will never
forget being in that ER waiting room with my son and hearing the doctor say I have 30 days to
live. I had a tough childhood growing up, and one thing my uncle always told me was boys don’t
cry. I guess I failed him. Time stood still. The whole family got worried, even my granddaughter
flew from Alaska to New York with her newborn daughter. I truly thought this was the end. A
visit to another hospital, however, erased our worries. The neurosurgeon said that the ER doctor
should have been fired for saying that. I could’ve sued him if I had recorded it.
Everybody was more concerned the second time around. On July 27, I was scheduled to have the
same surgery as before. In six hours they were only able to remove 90% of the tumor, which
convinced me to do radiation therapy. I don’t know why I didn’t do it the first time, I believe I
had the option to, but for some reason I refused it. Was it my stubborn nature? They claimed that
the radiation therapy removed the last 10% of the tumor.
Living with the left side of my face paralyzed has not been easy. I was very self-conscious after
the first surgery; I didn’t want to be in photos or go out in public. At that time I was a pastor and
had to lead service every Sunday. There are millions of people living in New York City, but in
my neighborhood I was the only one who had half a paralyzed face. People would double-take,
children point and ask what’s the matter with my face. Although it hurts, I’ve gotten used to it. It
did not bother me as much by the second surgery.
The effects this tumor brought on me have been substantial. I cannot lift heavy things or move
around a lot. I get dizzy if I stand up for too long but feel constricted to a chair, so I have to rely
on a cane to walk around. I can do small things like load/unload the dishwasher or set/clean up
the table but not much else than that. I miss big projects like building things. I am no longer
strong enough and don’t have the coordination to operate power tools. This illness has
emasculated me.
Through it all, I couldn’t have asked for better health providers. Every doctor, nurse, nurse aide,
physical therapist, and even the people who brought me my food or changed the hospital linens
treated me so well. I complied with all of them, respect goes both ways after all. I do not blame
my first doctor for my facial paralysis never getting better. I knew going into the surgery there
was that risk.
Should this tumor come back a third time, I wouldn’t do surgery. It’s a grueling recovery. Now
being 80 years old my body couldn’t handle that. I’ve accepted and made peace with God, just as
I have the other two times. If It’s my time to go, so be it. Living in Argentina for a period of my
adult life and not having adequate healthcare made me grateful this took place in America and
not elsewhere. I still believe, aside from the faults this nation has, we have one of the best
healthcare systems on the planet.
I never thought I could love my family any more than I already did. This proved that wrong. I am
very grateful to have a family that took care of me the way they did. If it weren’t for them, I
would not have even gone through the surgeries.
I’m doing the best I can within my limitations. I’m not happy with it but I’ve come to grips with
reality. I live within the parameters of my limitations. I do my best to stay positive. I wish I could
do more, I want to do more, but I know the reality is I can’t do more. One thing for sure is I will
not feel sorry for myself, nor let anybody feel sorry for me. I enjoy what I can do, as limited as it
is. Everyday I’m reminded of the saying that got me through the surgeries; I complained I had no
shoes until I saw a man who had no feet.