I commuted today. For real. I got in my car, dropped Blanche at doggie day care, parked at the train station, hopped the regional rail, arrived at my stop an hour later, walked to the Metro, took an overcrowded train to my stop, then walked uphill to my office. Two hours door to desk. And two hours back again tonight. The Virginia Railway tickets round-trip plus my MetroCard, plus parking, totaled about $25 for a single day of commuting.
No big deal, right? People in the city (Washington, LA, New York, take your pick) do it every day.
In the spirit of honesty: it fucking sucked. In fact, it sucked so much that I’m writing about it while I am still in the midst of my return commute. Because it continues to suck right now.
Because I shake. A lot. It’s hard to describe to people if they haven’t seen it, and even if they have seen it. I invite you to whisk a bowl of something. Doesn’t matter what. Just start whisking. And keep going for an hour. Two hours. Three, if you’re ambitious. Now feel that dead solid weight your arm has become from fighting to keep whisking? The muscles are tight like iron bands and it starts to hurt.
Now imagine every time your body feels frustrated, scared, hungry, happy, upset, stressed, hot, cold…pretty much any time an emotion goes through you, your arm starts whisking away at that bowl of something. Try to hold a pen, try zipping your purse, try answering your phone, try picking something up without throwing it on the floor.
My boyfriend (who gave me the awesome nickname, Wiggles) will accuse me of being dramatic. I don’t often shake that badly when I’m with him and the kids. “I think it’s because she’s happy when she’s with us,” his eldest said to him one day. And he’s right. When I’m taking my medication on time and eating right, my shakes subside and I have stretches of time where I can just relax.
But out in the world, where people move fast and aren’t interested in why you’re moving slowly or can’t get the money in the meter, I shake a lot. On my way home from Boston this past weekend, the ticket agent at the airport watched me struggle to get my license out of my purse and she offered to get me a wheelchair to the gate. I accepted gratefully and graciously.
This is my first blog after a long break. It’s been a horrible winter. I’ve been angry and disappointed, impatient and profoundly sad. And I’ve been afraid to write about it. Because I felt like, after seven years of listening to me talk about having Parkinson’s disease, people would get Bettina Fatigue. But what I realized when I was lying flat on my back with a broken hip, hating life, that what I needed to read, what I needed to hear, was the voice of someone else who had gone through what I did. I needed to hear other voices who had fatigue of their own – friends fighting cancer, friends who’d broken bones, gone through or were going through surgery, friends who were navigating grief and loss. And they are out there, and thank God they reached out to help heal me. And I hope I can always be there for each of them – each of you – that has helped me limp back to the land of the living.
So from now on this blog will be about the good AND the bad. I hope you enjoy the ride, dear readers. Because that’s life: some days it’s a shitty two-hour commute and sometimes it’s a perfect afternoon at home with the family.