Going Through Life-Changing Experiences with Parkinson's
There’s something about life-changing events that can truly be felt by everyone. For instance, when we reflect from mid to later life on people we once knew, we might say Mary just had a baby. Jose was promoted to branch manager. Dave and Jane just got married. We’ll also mourn divorces and deaths.
Passing on stories about someone's life can be more than reacting to social media or gossiping. To see other people’s lives lived, whether in sickness or in health, creates a positive connection. What’s more, watching the movie of someone else’s life run before our eyes can be life-changing for us, too.
When it’s put that way, isn’t it obvious that when it comes to our Parkinson’s diagnosis, people who we haven’t seen in ages will be affected by our situation?
Sure, these people might not have seen us in years, but something about our human nature understands empathy in a way that feels sorrow and kindness for us, even if they just knew us through (for example) our parents. They can’t feel or cure our heart, but because of what we were or our family is to them, they would give a hug, offer a kind word, offer assistance, or make a small gesture. As John Donne said, “No man is an island.”
In a world that can feel isolated or uncaring, this is incredible! Tremors aren’t contagious. We’re the same us as yesterday, but today there’s a word for this weird twisting feeling in my fingers and toes. So why does this woman who was my friend’s mother look so sad when she hears what happens to me after not seeing me since earlier this decade?
The answer is simple: proximity, community, and empathy.
This “unfair” situation is happening to someone I know. I never knew any of the ten million people living with Parkinson’s, but now, it just got real for her. The kid who hung out with my son, playing with their Star Wars toys, grew up to have this life-changing thing happen to him. I know he says that, “it is what it is,” but if it happened to him, it can happen to anyone.
Isn’t it amazing how a familiar face on a situation brings it all back home?
People really do care. Yes, there are always exceptions. Nevertheless, it doesn’t matter if these people address our issues awkwardly or hesitantly, their faces show they genuinely care. And even if they’re usually an emotional rock and they don't share their feelings, they still have them. They may be too tough to cry, but REM said it well: "Everybody hurts."
Here, just knowing they were here can make a difference. Someone cared enough to process my life-changing condition. I touched someone’s life. They brushed up against my burden.
We might not see the end result, though. Some people may respond to this through donations. Some give time for charity events. Others might volunteer actively or vote differently. Some people, like my mom’s friend Linda, responded by knitting me a prayer shawl. I don’t know what to say other than a heartfelt thank you with a whole bunch of real eye-watering emotion behind it.
Real people are messy. We may act similarly, but we’re all unique. However, as in Joseph Campbell’s Monomyth, our journeys make similar changes. In an ideal world, the most we can hope for from others in our own messy lives is empathy. The idea of truly caring about people’s well-being as opposed to just understanding it is a level of maturity that truly comes from experiencing someone’s life for “realsies.” Many of the toughest people still get choked up in private regarding the fate of friends and loved ones. They might hide it well, but you can feel it in their eyes when they acknowledge our struggles. That life-changing expression is respect.
What acknowledgment means
This is where our ability to educate and advocate can change lives. By seeing us cope and endure, we establish a connection that defines humans as thinking, feeling beings. The greatest fear of any absolute opinion against something is to become emotionally involved with the opposite reality on a human level. Shared experience makes us many, instead of a disconnected one.
When someone experiences that change, they no longer have a reason not to do something to make things better for a “connection” that is going through something. That’s why the lesson of a lifetime is so scary for some people. When people know how obstacles feel, they can’t abide by them. To put a person’s name on something is to make it real.
The humanities to move science
Shakespeare’s misguided Hamlet spoke of how “life ... is a tale told by an idiot, full of sound and fury, signifying nothing,” but when I think about it, one life has the power to signify everything, with its meaning, wonder, and pain. Whether our lives inspire us like Jack Kerouac’s friends did, when he wrote On the Road or we just ponder humanity and our place in it, all people have the capacity to educate and advocate. In some ways, our stories are like People Magazine, only instead of connecting with celebrities, we’re reacting to first or secondhand feelings in actual daily contact. I find that to be a good thing. Then again, I have spent my whole adult life celebrating the possibility of the humanities to guide decisions. Currently, I live it every day as I advise people regarding their educational dreams.
Sadly, it took Parkinson’s to comprehend the reality of sitting down and listening to someone else’s story. All interactions and activities involve people. I think about this a lot. Whether it’s Tom Friedman saying how understanding people’s reactions help to inspire innovation or funny memes expressing why not to clone dinosaurs, we realize our actions have an effect on others. What footprint are we going to leave on them?
We have an amazing opportunity to inspire others to help us in our fight. In my life, I have seen asthmatics strive to become respiratory therapists, former addicts become therapists and counselors, siblings of people with autism work with disability services, people from developing nations become medical professionals, and many other similar tales of inspired, life-changing direction. No matter what caused it, some event set it in motion. Here, I may never be able to benefit from a cure, but I can definitely educate and advocate for one to stop Parkinson’s from getting the next generation.
Do you or a loved one use smartphone apps to help with PD management?