I spent last week in Las Vegas attending the HR Technology Conference and SuccessFactors SuccessConnect conference, which took place over four days, with session locations across four different resort/casinos. I moderated a panel, gave a presentation, and had about 35 meetings. These kinds of events are tough on anybody. For a person with Parkinson’s like myself, who is also stubborn and driven, it can be even worse.
On the first day of the event, I woke up in my hotel room, took my meds, and nothing happened. My gait was frozen, my muscles were stiff, and I could not walk very well. I wound up calling hotel security to take me down to a cab in a wheelchair, and headed to the first location I needed to be at. Upon arriving at the convention center, I again had to flag down security to borrow another wheelchair and escort. This is not only physically demanding, but a huge emotional challenge as no one in my industry had ever seen me quite this bad before. But the alternative was not attending.
Everyone was incredibly kind and gracious, but I know people were freaked out. Thankfully, what I knew would likely happen, did. I drank some water, took my next round of pills, and after the opening presentation was able to walk and move freely again. It was still a long week but I got even more serious than usual about making sure I did everything I could to stay physically up for it. I still had some gait hesitation, but was mobile for the rest of the week. Well except for one memorable backwards walk through a crowded restaurant. Fun fact: Sometimes my brain will refuse to move forward, but allow me to move just fine backwards. There is no vanity in PD.
The thing about this disease is, some days no matter what you do, it is just bad. And when it’s bad, I don’t want to impact other people, but also don’t want to stay home hiding away. I’m constantly working with my doctors to tweak my medication, try new therapies, and working with myself to create habits to give me the best chance of good days. It’s not always easy. Sometimes you just want to be normal. But since the normal ship has sailed, I’ll take useful. Because even though I’m slower getting there, I still think I have much to contribute.
By coincidence, the week ended with a presentation by Michael J. Fox. He is an absolute inspiration whether you have Parkinson’s or not. He did such an amazing job describing what it feels like to go through a diagnosis like this. He was honest about the dark moments when you think nothing will ever get better. When you want to be bitter and angry and sad. The days when being a poster child for Parkinson’s and an inspiration just make you want to gag. But then, as he says, you remember that some lady gave birth in a tree – so what’s your problem?
I am going to have bad days. So are you. Mine might be more obvious than yours. But they’re not the end. And they don’t make me special. I hope my work, my ideas, my friendship make me special. The rest is circumstance.