It’s been exactly 22 weeks since my DBS surgery and my life has changed in so many ways. I’m sleeping soundly for the first time in years, I don’t crash and burn every time my medication wears off, my attention span is better, and my handwriting is clearer. And my hair is considerably shorter.
I’m traveling for work this week for the first time since my surgery, back to Vegas, which was the site of the last trip I took in October 2019. Typically I travel for work about 25 to 30 weeks a year, a schedule that had become progressively harder as my disease progressed. At this same conference last year I was switching over to a new medication and had an adverse reaction, and spent most of the week exhausted and dyskinetic, and freaking out all my friends and colleagues. Although I work alone, I’m very fortunate to have many colleagues and clients who have been incredibly supportive and continuously go above and beyond for me—helping me fundraise, walking slowly side-by-side, checking up on me, worrying, fetching drinks, helping me with buffet lines, etc. The list goes on and on.
In addition, since I’ve lived on the road for years, I have other “stranger-friends” out there. People who have no reason or obligation to be kind—other than their own civility and kindness—like the wonderful guys who drive me to and from the airport and take such good care of me. They pick me up at 4:30 am or 11:30 pm, remember my favorite radio channel, sense when I'm in the mood to chat and when I need to sleep, and always have bottles of water for me. I’d missed them and my other road family.
When I was flying a lot last year I had some Boston TSA agents who would remember me and help me through security, and JetBlue (my airline of choice!) gate agents who would help me board. I hate to “play the Parkinson’s card,” but I need help sometimes, and so many people were not only willing to help when I finally learned to ask for help (a whole other story), but also saw me, noticed me, remembered me, and offered help without my even needing to ask. They will never know how much easier they made things for me out there.
When I flew to Vegas on Sunday, I still had “wheelchair assistance” noted in the computer on my reservation. When I arrived and saw the wheelchair attendant holding a sign with my name on it outside the plane door, I told the young man—as I strode off the plane— that the sign did have my name on it, but that I didn’t need any help today.. The JetBlue crew member standing next to him actually cheered and said, “You’re back!” JetBlue has a small but passionate crew in Vegas and I’ve flown here at least once a month for the past 2 to 3 years. I recognized him and laughed, and pointed to my short hair and said, “The surgery went great!”
These “stranger-friends” had made it possible for me to continue to travel when my PD was all-consuming. Their kindness is something I will spend my lifetime trying to pay forward. It’s easy to complain about life on the road—and I do, and I will again I’m sure—but there are some pretty amazing people out there and you never know who you may impact. These “stranger-friends” made my day.