Earlier in the year I was invited to participate as a writing workshop facilitator for students who signed up for the American Medical Student Association’s Humanities Institute. I asked the registered participants to write an illness narrative. Minda Aguhob, a research consultant at Woodhull Hospital in New York, sent me this story about her recovery from a bicycle accident that resulted in a traumatic brain injury. Today, she is back on her bike and riding through the breathtaking views of Central Park.
Here’s her story. Please send me yours.
The first two weeks are a vulnerable time
by Minda Aguhob
Douglas, one of my riding partners, was frozen when he saw the blood. Edwin had to lift my limp body out of the ditch by himself. I had bounced to the right of the road with my bike; then to the left, banging my head on a large drain pipe in front of a mansion in Bedford, NY. We had been riding to the train station, in order to skip the second half of an 80-mile training ride from NYC.
Edwin had passed me on his bike, and saw I was not moving, not breathing. His assessment as an experienced NYC paramedic: No muscle tone, no teeth or clavicle broken; modified jaw thrust technique got me breathing. I gasped my first breath and began “posturing,” suggesting brain stem injury. But I didn’t need CPR; when the ambulance arrived in 10 minutes, I was fighting and combative. I had narrowly missed a metal spike coming straight out of the ground.
I woke up in the hospital, suddenly aware that I was arguing with Edwin about whether I could urinate at the moment.”Hey, you have a catheter in there. You can go!” I replied, “I don’t know about that.”
I was aware of Edwin and others in the room, perhaps family, through the fog of sudden consciousness. Thinking back, I never questioned why I was in a hospital bed, arguing with Edwin, a fellow cyclist who I barely knew at that point. Maybe it was the stories I heard by family and doctors, told and picked up on through my unconscious state. Though I had total Amnesia about the actual cycling accident that led me there, I just knew.
Finally, I went home, recovering from subarachnoid hemorrhage, to a new kind of hell. My mother, angry and blaming, was as intensely expressive as the atomic bomb at Hiroshima.
On day seven, I crawled out of the apartment, assisted by someone who I don’t remember, to a cab and thankfully remembered my own apartment address. Friends came from other boroughs and other states to help, people from childhood and college, and brand new friends, who I never knew would be there for me. I remember suddenly finding everything funny, like being drunk and high at the same time, walking down the sidewalk with childhood friend Amber.
Still, out of frustration, I created this checklist:
· Have meal partners.
· Have someone arrange and help w/your follow up doctor appts.
· Expect recovery to take twice as long as you think.
· Educate others on my injuries, constantly.
· Expect people to behave inappropriately and bring those things into therapy.
· Have a therapist and reliable people in your life.
· Find other interests, besides sports and career, to enjoy in hard times.
· Let your needs be known repeatedly; multimodally.
Meanwhile my apartment, a refuge, was also a trap each morning; I replayed obsessively the events leading to my resident physician boyfriend to break up with me a week after the accident.
I practiced walking and made it downstairs with a cane after a week, then cried when I could hobble to Central Park and the local café after a month, even with pedestrians bumping into me and buses ignoring my disabled state. While sitting on the 7th Ave/ Columbus Circle island, I dropped my phone and didn’t notice. One of the sidewalk peddlers saw and picked it up for me.
“Affection without obligation is the basis of true friendship.” My dear friend Ilaria declared, as she held doors open and philosophized with me. I remember thinking those 98 degree sunny Saturdays were worse than normal days, when I more intensely preferred death to disappointment by people who I thought loved me.
I stopped dreaming at night, literally, for months. But one of the first dreams I remembered was my patting my dog’s head and her giving me her paw. I woke with such longing for her company and love.
I noted the first day I could run around and schedule things like I used to, despite knowing there were consequences – neglect of my true self. I now easily loved my mentally ill sibling and his stories of hospitalization, and listened to my constantly injured colleague with lupus.
I called it my new sweet spot in New York. There’s the insight that we are all victims. I never knew that more than half the pain of being a patient is first and always about the pain in your relationships.
I cried when I was able to turn my head. Today was the first day I didn’t have to fight too hard to break out of “zone outs” where I stare into space for minutes at a time. My job is resting and healing now. I will find something fun to do each day that can do alone! The beach. Is that possible? Now, I will stop to just live. I’ll even stop my application to med school for that.
Can I love being in a relationship with me — the same “me” that once tortured and threatened me?
A friend, a stroke survivor, told me life can actually be better after the accident and for the first time, I can see how.