Parkinson’s Isolation

All sickness requires some isolation and is mandatory when contagious. Long term illness that is not contagious CAUSES isolation as opposed to REQUIRES it.

I wonder why.

I suppose we are taught to isolate ourselves when we’re not feeling 100% well, strong, happy and healthy.

I have a friend who lives with an autoimmune disease called fibromyalgia, who will disappear for days because she’s feeling poorly and stays at home, in bed. There have been times when I have phoned her during one of these episodes she calls, “fibro flare ups.” When she answers the phone she sounds weak and without vibrancy- almost sunk. My first response is always to say, “I’ve called at a bad time.” I feel like I want to hang up but I’ve learned not to say that.

Instead, I stay on the line. I tell her I’ve been thinking about her, which I had or I wouldn’t have called. I let her know that I’ve missed her and I share what is going on in my own life- fun, happy, silly stories as well as challenges.

Although I cannot see her, I visualize her being a deflated balloon and every story we share seems to be another puff of life giving her what she needs to remind her of her whole self. Personally, I laugh a lot and usually by the end of our call she is laughing too.

I ask myself, “Would it have been better to leave her alone with her suffering?”
No.

Isolation can have a positive purpose when sickness emerges but too much adds another problem. We need each other. We need to interact especially with folks living with non contagious illnesses. After my phone call with my sick friend, I was not depleted. I felt energized and thankful that I had called at that time. Reaching out to an isolated person also benefits me. It is truly a situation where we both benefit.

It takes much courage for a person suffering with a non contagious disease to go out in the world at all. When they do dig deeply enough and muster that courage to get up and go to the laundromat, hardware store, grocery store, or restaurant. Let’s try something new.

Instead of making them meet us where we are in our day, how about we make a choice to meet them where they are?

My husband with Parkinson’s was able to grocery shop for far longer than his disease would have allowed because there was one cashier who was willing to help him every single time with getting his card to work, bagging his stuff in a way that he could carry it and asking him if he needed help to his car. She did this cheerfully and didn’t pay any mind to her growing line while she helped Andy. Each time Andy left that store smiling, feeling seen and better than he did when he walked in.

If you are lucky enough to be healthy and fit and you are standing in a long line for the post office or a public bathroom, consider letting a less steady person go before you. These examples go on and on.

People living with chronic and often incurable disease cannot will their condition away. It’s up to those without those challenges to notice, step up, offer, be willing, engage and support those brave enough to come out of isolation and grace our world with their presence.

And guess what? You win too.