I have no sense of direction. Literally. I can get lost on a straight line, never mind a path with twists and turns. Understandable, I guess as I come from a people who were lost in the desert for 40 years. Frankly, if it weren’t for GPS I’d be late everywhere all of the time.
I have no sense of direction. Figuratively. I was diagnosed with PD at 50 – smack in the middle between early onset (which is 40 and below) and 60 – or older – the usual onset of the disease. I’ve termed my Parkinson’s as ”Precocious Onset Parkinson’s Disease,” a moniker I think should be incorporated into the medical literature. Pity no one’s asked…. At least not yet.
Parkinson’s is a curve ball on the path of my life. I didn’t expect it; it doesn’t run in our family – nor does it run in many families of those with the affliction. Now, I’m looking for PD’s place in my life – between the curves in my life’s road. I was diagnosed a year ago today. On November 5, 2015 I sat in a basement office at UCLA and heard officially what my dear, doctor friend who’d secured the appointment for me already knew and had prepared me to hear; Parkinson’s Disease. It was official. I went on with my life that day, running errands, keeping appointments … staring at my left hand throughout. Friends and colleagues generously — and with more grace than I likely deserve — fulfilled obligations for me last November and December while I spent hours digesting the meaning of my twitch. Thank you.
Over the past 12 months, I have gestated into a person with a twitch versus the me I was upon the day of my diagnosis… a Twitcher, just a Twitcher. It had been a windy, irrational process that got me into the office of my diagnosing doctor 365 days ago. It a very dark weekend spent in a literal and figurative fetal position that followed. But now it just is. Now I have the time – and the grandiosity of thinking – to wonder what my place in the Parkie Pantheon – if such a thing exists – might be.
I started my pursuit of a place in the Parkie Pantheon in August, when I spit into a funnel to help me, to help fellow Parkies – to help all those who pursue knowledge to fight this and related diseases. I answered a survey. Then I spit into the tubes the scientists at the University of Indiana sent me so that they could sequence my genes in search of a specific marker. I felt oddly self-righteous as I swilled spit in my mouth, working hard to generate sufficient saliva to fill the tubes up to the lines required. It’s harder to create saliva on demand – especially as one is not allowed to eat or drink anything for a half hour before producing the specimen – than I expected. Will this be my only contribution to the Parkie Pantheon I imagine? Is my spit all I have to give to this world?
No. I refuse to believe that this is all I have to offer. Through this blog I offer a voice to Twitchers everywhere. You – we – are not alone. Banish the shame, embrace the hope of research, the fellowship of community and the laughter that will buoy us all. Embrace this life, this life filled that is filled with unexpected curve balls whether they be divorce, disease disaster of any kind.
My spit is not my only gift. My brain will go to science upon my death and in the meantime I will answer surveys, write blogs – and hopefully a novel. I will be, God willing, an exemplar to all Parkies who care to laugh. At least I hope so. Parkinson’s is not what I wanted for myself – neurodegeneration rarely makes it onto anyone’s Bucket List – but it is what it is – it’s my life. It’s my family’s cross to bear too. The daughter, who even in the midst of her fierce, fitful cries for individuality, offers her hand for me to hold when we’re navigating an uneven path. The young son, who is now okay holding my left hand and the older one who now mentions the affliction with ease. The husband, whose inappropriate jokes lift me when I’m down. All of us are swinging at this curveball in our own way.
This curveball is another unchosen, winding path on which I find myself, but it is my life. Life. This life that makes us stumble … but not fall. Living life fully, embracing what is, that is what enables us to rise up again. And so I will stand, embrace my diagnosis and shout about it until I am hoarse. I’m a Parkie. This path is a curvy one but for once I know how to navigate it. My new normal is going to be just fine.