When other people inconvenience me, I try to remember that I have no idea what is happening in their lives. Navigating daily life when my first husband, Ahmad, had stage IV bladder cancer reminded me how impatient most of us are about life's insignificant, minor hurdles.
Ahmad went from jogging daily in April 2013 to needing a walker by July. We were told he could not be cured. We were told he had from eight months to two or three years to live. (He lived 11 months.) We were told the back pain he felt upon diagnosis would not go away.
Our vibrant city of San Francisco became an obstacle course. His optimistic world view drove him to want to be out of the house and enjoying the city every day he could. I am grateful for that. But activities that normally wouldn't merit a second thought morphed into complex logistical undertakings. For instance, stepping onto or off a curb required my stabilizing the walker and his very gently moving to minimize the pain of the giant tumor pressing on his spine. Drivers angrily honked at our often double-parked car. We tried to ignore the chaos and focus on taking a step.
Once, I parked in a bus stop because I had no other options. This can be penalized with a costly ticket. I didn't know what else to do. Ahmad was leaving a restaurant and this was as close as I could safely get. Although we had a disabled parking placard, the on-street spaces were simply too far away. He was too proud to use a wheelchair since he could still walk.
The bus pulled up behind me just as I was getting out of the car. The bus driver immediately started yelling. I tried to ignore his anger and gave a friendly wave and flashed the disabled placard. I was hoping he would realize I was trying to help someone. But Ahmad was still in the restaurant. What the bus driver saw was a healthy woman in yoga clothes, illegally parked, with a disabled parking placard. He was livid and didn't hold back.
"You can't park here," he screamed, "I'll have you towed!"
I approached the bus and tried to explain.
"I'm so sorry," I said. "My husband has cancer and he can't walk very far. He is coming out of the restaurant in just a moment and we will leave. He is just very slow."
"I'll call the police," he screamed. "I've got your plate. I'll have you towed!"
I felt the tears welling up. He oozed hostility. San Francisco had recently started allowing "tech buses" that transport city residents to Silicon Valley companies to use public bus stops. But for us to use the same stops in the trenches of terminal cancer was perceived as a near crime.
I wanted to stay calm and reason with him. But I was simply too worn out. Worn out from all of it: the terminal prognosis, the chemo, the transfusions, the pain management regimens, the pity, the sleepless nights, the ER, the wanting to rewind to the carefree life we'd lived just a few short months prior. And I was worn down from people who misconstrued our behavior as rudeness or arrogance.
"You go ahead," I said. "You call the police. We'll see if they want to tow the car of a disabled man dying of cancer."
At that moment, Ahmad emerged. He looked like a cancer patient: thin and balding and slow moving.
The bus driver said nothing. No more threats but also no acknowledgement. No apology. No emotion of any kind registered on his face.
He simply closed the door and drove away.
I think about this incident every time I feel that someone else is impairing the efficiency of my day. I gently remind myself I have no idea what is happening in their world on this day, at this moment.
We've partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories.
Renata Khoshroo Louwers is a writer and a bladder cancer patient advocate with the Bladder Cancer Advocacy Network and the Research Advocacy Network. She lives with her husband, Tim Louwers, in Virginia's Shenandoah Valley and San Francisco.
Photo by ykanazawa1999
