by Jane Miller
Whoever wrote the definition of “advocate” didn’t know the half of it. I mean, “to speak or write in favor of; support or urge by argument; recommend publicly,” does not even begin to describe this past week in Washington, DC.
I am exhausted beyond words. The insomnia that dogs me nightly is worse when I travel. It has been like that for as long as I can remember, no matter how many times I have flown for work. The insomnia that sits up with me when Erik is not in bed comes along, too. The insomnia that comes from Parkinson’s, fibromyalgia, and sleeping on titanium refuses to be outdone. A powerful triumvirate, these three insomnias.
I have spent hours being “on.” It’s what I do. It’s my job to make people laugh, welcome them, watch out for kittens. I am in the process of learning (this is number 1) that it’s not my job to do all of that all of the time. Sometimes it’s my job to relax.
I am also learnign (2) that it doesn’t matter what others think … I am goign to do preboarding becuase I cant’ ptu my carrry-on in the overhead withoug droppint it on mh head, and I need more time to get situated. Most peoeple don’t notice when my right side doesnt’ work along with my left. Don’t care. If anyone hs the temerity to say somethign, thye will regret t he verbal tongue lashing that will be round-housed to their head!
[The typos in that paragraph reflect how I type when my meds have worn off. My right side tenses up and won’t move the way I want it to. Then it starts to hurt.]
Learning #3 … I have a story to tell, I am the only one who can tell it, and some people will be better off from hearing it. They will know they are not alone. They will know they have a strength inside themselves they may not know about yet. They will know their story is worth telling, too.
Learning #4 … Just because things don’t go as planned doesn’t mean they don’t go as planned. Yesterday, which should have been spent on Capitol Hill, was spent in the cavernous meeting room at the hotel. The remaining advocates were tasked with making phone calls, using social media, whatever method they could to rally their forces on “Parkinson’s Advocacy Day.”
Perched on the stairs outside the meeting room, I set up my temporary war room, calling the offices of Senators Merkley and Wyden and Representative Walden. Emailing every Oregon congressperson. Tweeting. Even though it was a “snow day” and the Capitol was shut down, there was still work to do. I was able to reschedule my meeting with Rep. Walden to this morning. Amazing,given that Thursday was the day after they revealed the spending bill, and the day most of them were heading home for the Easter recess.
Learning #5 … Great risk can bring great reward. This has been a difficult, painful week, and a wonderful experience. Today was no different. We drove to Capitol Hill along the banks of the Potomac where crew teams rowed their skulls through the misty sunshine, past the Washington Monument and Jefferson Memorial, reminders of a history based on a trust in the future and a knowledge of the past. We caught a glimpse of the brilliant bronze Arts of War and the Arts of Peace statues on the Arlington Memorial Bridge glinting in the sun before finally stopping before the columns of the Capitol buildings rising skyward.
Holly, my guardian angel from Parkinson’s Resources of Oregon, and I were sitting on the bench near Rep. Walden’s office when we saw, of all things, a puppy scamper around the corner. He was quickly rounded up, but we agreed that an office that boasted a lab puppy was a good omen. We gathered our materials and walked through the doorway right on time.
The puppy, whose name is Teddy (or “Theodore” when he’s being a bad puppy) greeted us with great enthusiasm, biting our fingers, jumping up to grab my scarf, untying my shoelaces. His owner, Nolan Ahern, Rep. Walden’s legal assistant, led us into the inner office. He had done his homework and was able to update us on our main talking points.
Rep. Walden was gracious, kind, and attentive. Holly had me take the lead in guiding our discussion – after gently introducing the topic of how Parkinson’s affects me. I told a Reader’s Digest condensed version of my story from 2014 through today. I used to be so smooth, quick with a fact or a joke, able to handle with ease the stress of meeting with CEOs, government officials, or 1,000 high school students.
Which leads to Learning #6 … Just because you’ve lost something doesn’t mean it’s gone. I can still communicate, my vocabulary is still strong, albeit funny when it’s wrong. I may not be smooth; I may pause, stop, or search. But I can still communicate, tell stories, and exercise my love of language.
Learning #7 percolates as I type this on the plane. Parkinson’s is hard (ok, no kidding), giving up is harder. I have faced painful fatigue, self-doubt, and increased symptoms. With help and encouragement, though, I have become an advocate.