It is estimated that 60% of people with Parkinson’s disease in America are homebound
True, we are a group of lonely people.
Last Friday, I took a bus in the early morning at 5:30 for a research session at 6 o’clock. The bus driver greeted me warmly with “good morning, welcome onboard!” There were a few passengers but nobody were talking. A calm and quiet ride, I thought, as I sat down on a seat in the front row.
As aoon as I sat down, my muscle spasms and rigidity started. It felt like an invisible rope was wrapped around my body and arms, and it got tighter and tighter. It became so tight that I found it hard to expand my lungs to breathe. I was struggling to breathe. I closed my eyes, lowered my head and pressed my neck backwards as hard as I could to create a space for my airway. I tried to visualize the space I created and the air going in and out of the space. I’m fine, I told myself.
I opened my eyes while trying hard to keep the space open. Nobody seemed to notice me. After I got off at my stop, I thought about what just happened, a silent struggle on a bus ride.
“It’s just a twenty-minute train ride, I don’t understand why you would make things so difficult for everyone.” A friend complained after I shared with him my concerns taking public transportation. I told him my bus ride story, I told him the potential anxiety and breathing issues I might experience, but he just kept ensuring me that there is nothing to be worried about. “There is no stress on the train, four stops, easy ride.” He said. I didn’t know what I should or shouldn’t say.
I don’t want to be seen when I’m struggling. In fact, knowing that others can see me while I’m having a hard time makes my symptoms worse. However, I want to be understood by the people around me, the people I care about. When sometimes I make “rediculous” decisions because of my vulnerability and all the mixed feelings around it, I hope to be seen, to be heard.
I feel lonely, sometimes.
