“In November, 2013 I was diagnosed with Parkinson’s disease. I was a 29 year old kid doing quite well for myself living and working in China when I got the news.”
That is what the about page of this blog begins with. I go on to talk about this disease and some of the things I have done to try and combat it. However, there is a pretty big part of the story that I never really told before.
You see, at the time I was also in love.
She was everything I wanted. Pretty, witty, and knew how to put me in my place when needed. After my diagnosis, in spite of the recommendation of my neurologist at the time, I went back to China, where I had a great job and someone who I thought might be with me till we were old and grey. We did a bit of traveling together, I had gotten to know her father and I even introduced her to my Mother. A year went by and she had stuck with me through all the shakes and bumps in the road. I thought she might be willing to stick around for the rest of them as well.
But it wasn’t to be. We took a month apart to do some independent research and sort out what we each wanted. She, as any good millennial would, took to the internet looking for guidance and support. A few months later I found this on r/Parkinsons…
As you might expect, she realized this disease would likely become too big of a burden for her and she did not want to live with that kind of uncertainty, especially because she really wanted to live near her family and friends and start a family of her own.
Now, I wish I could say that I handled that news with suave and grace, but that’s not true. Instead, I took out my frustrations on her, sending a series of nasty messages and emails until she blocked me completely. It was the darkest time of my life and was made worse by my surroundings. I was still working and living in China, and though I had some friends there, expat communities in that part of the world tend to be rather transient, every month more of them were leaving me behind. I wanted to die.
Much of that might feel similar to other experiences. It was a breakup that I handled poorly. So what? Well, for me it was made worse by my diagnosis. It felt as though the loneliness and isolation was accelerating my disease and I tried to put the blame for that on her as well. Looking back at those emails I wrote, I hardly recognize myself.
It took two more years but I eventually quit what had once been my dream job, running my own school in China, and went back home to seek an answer to my problems. I rekindled some old friendships, and made a bunch of new ones as I scoured the world looking for solutions to this problem called Parkinson’s.
It was not an easy time, I missed her every day and it took years for the feelings I had for her to pass. I’d like to say that there was a moment in which it all came together and that I have since found someone else and that I have completely forgotten her, but that’s also not true. From time to time I still think about her and wonder where she is and how she’s doing.
However, the reason I can now write this is that I have firmly moved on. It took a lot longer than I expected it to, and cost me most of what I had saved up from working in China plus a good chunk of my 30s, but I can confidently say that I’m a better person for it and that I’m able to love life once again.
Also helps that I’ve figured out the best solution possible to that other problem nagging at me brain (adaptive deep brain stimulation, which I’ll be able to share more about in six weeks when my clinical trial period ends.) Most important, I figured out how to be happy regardless of what happens to me, my mind or my body.
There are a lot of reasons for why I am very grateful to be who I am. I have loving parents, a sound enough head on my shoulders, supportive friends in every corner of the earth, and the best clinical care team on the planet. However, this might sound like silly sophistry to some, but I realized somewhere along this journey that life is not about you or who it is that you think you are.
Huh? Well, for most of history humanity has seen itself as the center of all creation and that belief has driven us to do most of the things we do. However, these last few decades biology has revealed to us a different story, one that should reshape how humanity sees itself.
To put it in the simplest terms I can, we are each just a tiny part of the eternal story of life. That is not to say that we are inconsequential, we matter a great deal to those around us, but none of us, nor whatever it is that happens to us in our lives, matter as much as we think it does. The difficult part is figuring out how to be okay with that.
I can’t tell you how to get there, life does not come with a blueprint. But I can say that you will know you are there when you are able to look across the aisle at people who have hurt you immensely, or at people who you might vehemently disagree with, and be ok with them.
It might help some to remember that though life is beautiful, it will one day end. That should be all the story we ever need.
Dedicated to Frances. Hoping you find the strength to get yourself out of your own hole.
Thank you for sharing this deeply intimate story Ben. Relationships are complicated. YOPD doesn’t help. I hope this post encourages more of us YOPD folks to open up and discuss this topic more.
Yup, definitely the strain it puts on relationships, from all sides, is under-explored. Though I’m not sure what good if any it does to research, I’m still glad to see and hear all the messages from others in this weird little community that they’ve found some comfort in these words.
Benjamin. I am sorry you went through such a painful time. It’s amazing the holes we can dig ourselves out of. Mark
Thanks Mark, couldn’t agree more.
Wow, this is very insightful, Ben. Thank you for sharing another aspect of your personal story and the redeeming aspect of seeing it with better lenses years later. I should have imagined life in China was not only work but also included love. I am sorry that the PD diagnosis disrupted all of it. I hope you know love has been coming your way from many corners, mine included.
Indeed I do, thank you Alberto for all that you’ve done for me and for all that you continue to do for this odd community we find ourselves in.
I would love to connect! I have plenty of insight from my moms story with atypical Parkinsonism. You’re definitely on to something with the B/T cells- how can we connect?
Life is a strange journey of daily lessons. It so often seems like climbing a mountain, looking up you seldom see the summit, but the next boulder. The climb isn’t always steep, nor hard and sometimes you start believing, that the ride will be a smooth one from here on out…..
But the journey is one of growth and growing does seem to be less with the wind blowing from behind, than against you….
My experience has been, that whenever the ride gets to be smooth, its best to enjoy the moment, before life, programmed as it is, to educate us, is , will very soon serve up a new lesson.
Your experience , that you so generously share with us, was a HUGE one and a dose larger that anyone should need to go through….
Is there a summit to be reached in a lifetime ?
I lean towards thinking that it takes more than a single lifespan interval…. at least I have met people so wise and at peace, that I have had the feeling being in the presence of an old soul…
In any case I am hoping that I learn from my lesson of having been diagnosed with parkinson just days shy of 55 years of age in 2018, as I would be more than willing to mark the experiene off as lesson learned 🙂
Your book, along with Dr. Alberto Espay, Brain fables, was a gift to us all. In the context of your journey, I can only bow in respect for the number of boulders it took to climb to get there.
The issue of the primary caregiver is such an interesting one. They also are presented with a heavy lesson. Every relationship is presented with junctions , some where both partners might even ask…is it worth it. I keep getting flashes of a course me and my wife took. There an elderly couple also partook and the husband had a rather advanced stage parkinson, at least so, that he did seem incapable of speach and hus wife alway replied for them and him. But the anoyed manner she replied in revealed how angry she was about their or her situation and role in life…..
When these flashes of memory occur, I ask myself, can I expect this of anyone…. am I delivering my wife a promise of discontent.
When I ask, she replies that she isn’t like that and she also has her own personal destinee and journey. But it still feels like a BIG ask.
We, the PwP get treatment, but it is equally important to find support and treatment for the partners and caregivers. Their climb/journey is a heavy climb with just as many worries about the current and future moments.
Thank you so much for sharing your thoughts and experience, for your strength and courage.
This does help me in my climb.