I recently went on a weekend trip to the coast with a group of friends. We stopped at the Tillamook Cheese Factory to stretch our legs and let ourselves be tempted by the local ice cream.
We looked like everyone else there, except some of us have Parkinson’s. Some of our symptoms are obvious but for the most part they are unremarkable. None of us consider herself to be disabled, even if we have a progressive neurological disease.
We look healthy — and happy — right? We are!
Many people living with Parkinson’s are fully active in their lives, including work, families and outside activities. Still, we struggle to get through our days.
The term invisible disability is being used more commonly to refer to symptoms such as debilitating pain, fatigue, dizziness, cognitive dysfunctions, brain injuries, learning differences and mental health disorders, as well as hearing and vision impairments. Although they may be not obvious, they can limit daily activities.
When we are able to put a definition on invisible disabilities, it helps us understand the challenges people experience in their daily lives.
Our trip to the coast was lovely. The weather was pleasant. And enjoying the company of several friends from my Parkinson’s community was sweet.
After I waited in a long, long line to get into the Portland Community College gymnasium and found my seat, I looked around for the nearest exit. I heard other people doing the same.
People seemed keenly aware that we were on a college campus, that our bags had been searched and our presence scrutinized by several uniformed sheriff’s officers. Most of us also likely noticed that a number of children were present. All good reasons to be a little nervous.
I amused myself by trying to pick out the U.S. marshals in the crowd. Easy enough. How many Portlanders do you know who wear a short haircut, a dark suit, and have a springy cord coming out of one ear?
Justice Sotomayor’s visit was sponsored by the library and I saw several of my colleagues taking tickets and managing volunteers. I was glad that I was there as a private citizen, able to come and go as I please — or so I imagined. Later, I felt a little less like a private citizen as we were told to sit still in our seats, lest we make the U.S. marshals nervous.
A large crowd had shown up to show our appreciation for a Justice that we think of as one of our own. She represents the vision of inclusion and liberal politics that is Portland’s milieu. That’s why it feels so important, so necessary, to keep her safe on our watch.
It must be nerve-wracking for Justice Sotomayor’s staff to attend these events. They plan out every moment of her day, where she’ll walk, who she’ll meet. I saw her staff exchange the glasses of water on stage at least three times, and one man in a dark suit carefully wiped down her entire path.
Once she got on stage, it was clear that Justice Sotomayor kept her own counsel despite the whirlwind around her. She knew what was important to her — meeting and greeting the kids in the crowd — and she had enough power and courage to make it happen.
Justice Sotomayor told the crowd that she had made a deal with her security detail. If the entire crowd — some 700 of us — remained seated, she could walk out into the audience and hug kids. But if any one of us stood up suddenly, she would be whisked away and the event would be over. So we all sat — even those of us who wanted to stretch after sitting on gymnasium bleachers for an hour or two. We obeyed and sat and Justice Sotomayor walked out and hugged our kids, one at a time. She couldn’t have been more charming. And then it was over and the crowd was dismissed in rows of three. We headed for the nearest exit and breathed a sigh of relief. We hadn’t lost Sonia on our watch. We gave her back to the world. I hope they take good care of her.
Ooooh, I forget how cold and unforgiving boxing gloves can be. Someone — maybe Kimberly, our coach — or one of her many volunteers — will help us tighten the straps around each wrist.
But first, there’s some ferocious hugging and greeting to be done. You’d assume that the Rose City Knock-Out Ladies — all of us with our own unique diagnosis of Parkinson’s Disease — hadn’t seen each other for more than a day or two.
We laugh and sometimes cry and then we admire each other’s earrings and see if someone has new workout gear. There’s news to share, not always good. Then it’s time to head to the punching bags with the others.
Away from the boxing gym, I suffer small losses all day long. My foot drags. I forget a word, my fingers clench and keep me from typing any faster than a key at a time. I remind myself to stand up, don’t give in to stooping, swing my right arm when I walk. Every day, I fight to do the easiest things: shower, get dressed — don’t get me started on sports bras! — hurry for the bus, and try to balance gracefully if I don’t get a seat. Every day I work at not falling into the laps of strangers.
But in the boxing gym, I’m strong. With gloves on, I hit the bags with everything I have. Call it fighting, call it stress relief, call it major annoyance at this cold and unforgiving disease.
Afterwards, I sometimes need help getting my gloves off. They’re warm and damp inside. I’m dripping with sweat, my face a lovely red. And my heart pounds. I am strong and alive.
In her memoir, “Are You Somebody?” author Nuala O’Faolain describes her common experience of being recognized in public but not being easily identified or named. People guessed that she was famous but they couldn’t say who she was. She would be in a lounge bar or the grocery store, and be asked “Are you somebody?”
Aren’t we all somebody? Even as we grow comfortable with our skin and the landscape around us, we can find it hard to listen to our own inner voice. As we get older, the possibilities of being “somebody” narrow down into a more slender path. We realize, for example, there will be no athletic career for us, nor are we likely to go into politics. Or acting or a host of other things.
Still, that’s not the kind of “Are you somebody” question that we’re asking. We’re all out here in our own little vessels, these aging bodies, these failing brains. It’s all we’ll ever have. As O’Faolain wrote, we’re not anybody in terms of the world, but then, “who decides what a somebody is? How is a somebody made?” O’Faolain believed she’d never done anything remarkable; neither have most people. Yet, most people, feel remarkable.
Recently I was slightly remarkable, or, rather I was mentioned in the newspaper. In the course of my work as a research librarian, I helped an elderly couple reunite with a lost wedding band. (You can read about it in the article below.)
The article was picked up by a couple of other news agencies and it was also reprinted later in the week. By that time, my name had been edited out of the story. I was remarkable and then I wasn’t.
There is a yoga practice where you say your given name out loud three times, and wait in a meditative pose. And sometimes people hear their own desires, their own small voice responds. It reassures us that we all are somebody, we all matter. The psychoanalyst Carl Jung warns us, though, that it is easy to deceive ourselves. I think that when we are able to be sufficiently quiet and our thoughts are open, there is no deceit. That’s when our still, small voice — the “somebody” that we are — can speak.
Let’s say you hear about a new drug or a research trial. Or you attend a conference. After hearing a particularly inspiring speaker, you may want to make some changes to your routines or diet or whatever, or do some of your own investigating. How do you get started? It can be overwhelming, but there are many tools available to help you become better informed.
Carry a small notebook
One good habit is to make notes about any topics that catch your interest. Write as soon as you can, while the information is still fresh. Describe who told you or where you first heard about it. You can make a note online, or send yourself a text.
Keep an eye on media
Most online and broadcast stations keep an index of previous subjects. If there was a newly-published book being publicized, you can check a website such as FreshFiction.com. They review the top “buzzed” books of the week on shows like Good Morning America, Today Show, NPR and Public Radio programs, and many more.
If it was a magazine article, use your cellphone to take a photo of the article and also snap the cover of the magazine that shows the date or edition. If it isn’t a magazine that you have at hand, check with your library to see if they can get a copy of the article for you.
Capture what you know, however little
Did you overhear people talking, say at the gym, but didn’t quite catch the details? Try to capture what you do know, or what it sounded like, to the best of your ability. The important thing is to get down enough information so that you can follow up.
Evaluate research results
You’ll need to read carefully the research that interests you. Studies can be flawed, or worse, make claims that their own research doesn’t support. I like to ask if something passes the “Reasonable Test” — does it seem reasonable?
Be wary of any articles that make outrageous claims. You’ll want to read and think carefully about what’s being presented. Is the source legitimate? Would you trust them under different circumstances? If it’s a new medicine, has it gone through rigorous testing? Was the research done on a large enough group of people? Keep track of the skeptical questions you have. It’s easy to fall for a false promise when one is eager for a cure.
Three years ago, I attended my first World Parkinson’s Congress (WPC) in Portland, Oregon. It went by in a blur. I had been recently diagnosed and I could barely take it in, but many things left an impression. Like the hallway displaying larger-than-life photographs of faces of people living with Parkinson’s. The wellness events filled with dancing and music. The plenaries and keynote speakers. Most of all, I remember the fellowship I felt from being surrounded by so many people with Parkinson’s.
Fast forward to the WPC 2019 in Kyoto. This time, I was giving a presentation with my dear friend Kat Hill that we titled “Resilience after a Diagnosis,” and we were traveling with a small community of friends from Portland. I knew that the trip would hold surprises that no amount of planning would cover — and that traveling was going to take some stamina.
When we first started planning, a photograph of bright reddish gates — called torii — at the Fushimi Inari shrine in Kyoto caught Kat’s and my imaginations. The gates seem to shimmer, catching the sunlight and rippling as if they were fabric instead of wood. Kat and I used the image of the beautiful torii at the end of a short video called Just Imagine that we made for the WPC 19 video contest.
“When we were young,” Kat and I expressed in the video, “we never imagined that we would travel the world” to attend an event like the WPC 19.
Once again, I came away from the conference with lasting impressions. I learned about current research on pluripotent stem cells, and the GI tract and gut microbiome, and I felt I had a valuable voice in the conversation as a person living with Parkinson’s Disease. I helped facilitate the well-received World Cafe conversations and exchanged ideas with people from Europe and Australia and Japan. One night, I went to hear sweet music performed by a Japanese folk singer, a Portland friend with Parkinson’s and her guitar-playing neurologist, and for the finale, the audience flooded the stage with appreciation.
WPC 19 changed my relationship with Parkinson’s Disease. I’m no longer just a person living with it. I’m eager to move into a larger advocacy role. The Congress opened doors for me and renewed my hope.
Like door ways, the torii gates are said to mark the transition from the mundane to the revered. Once the Congress was over, Kat and I wanted to visit the shrine that had so inspired us. Seeing the torii was to become a high point of a trip marked with many high points.
Even though we arrived early in the day, it wasn’t just us walking up the first steps at the Fushimi Inari shrine. There were hundreds and hundreds of visitors. We started climbing in lock-step with the crowd. There were young and old visitors, families, individuals, observant Buddhists, irreverent Americans. Occasionally someone posed for a photograph and the whole procession would stop.
Earlier, I had read that Fushimi Inari Shrine had 10,000 torii gates. We learned the hard way that there are actually over 32,000 torii gates and over 50 flights of stairs. Even when it appears that you have reached the top of the stairs, there are more to climb.
The lessons that I learned from all the unexpected stairs at the shrine were similar to the lessons I learned by attending the Congress. There’s so much we are trying to understand about Parkinson’s Disease. The more we learn through research and study, the more possibilities we have to reduce symptoms or discover a new medicine or — knock on wood, find a cure — and still there are new complications and surprises.
It took us more than two hours to reach the top of the Fushimi Inari Shrine. By then, the crowd had disappeared, leaving hardly anyone except Kat and me — two women with Parkinson’s — and our spouses and friends. We knew the path still held surprises and would likely tap all our energy. So we did what people do every day: we put one foot forward, and then the next. And we were amazed and thankful to do so.