Everything is fine
The toughest question in the world - aside from ‘what’s for dinner’ - has got to be “How are you?” We’ve all had a taste of this dilemma over the past few years, as we tried to come to grips with a global pandemic that has killed off nearly 7 million human beings, climate -change driven storms and fires and droughts, and societal disruptions like an attempted coup in the US, a few wars here and there, inflation, and ongoing questions about whose lives matter. (I mean, is it really a mystery as to why our younger generations are being diagnosed with record levels of anxiety and depression?)
In addition to this collection of issues that, while they may not pose an existential threat to our entire species, certainly pose an existential threat to many and to our way of life, we all, as individuals have some sort of shitty thing going on in our lives.
But at the same time - life is often still grand. We can still enjoy the sunshine, the snow and the rain. If we’re lucky we have a pet or other humans that we can snuggle with, food on the table, a roof over our heads. We can be surprised by the kindness of strangers, and enjoy the inherent richness of being alive.
Which is why, when asked ‘how are you doing?’, my brain kind of seizes up as it tries to sort out an answer. Inside my head, it goes like this: “I love my husband, kids, dog, house, job, and life in general, but I worry that the snows we have this winter will cause flooding in the spring and also allow the plants to grow a lot which is great until we have a drought and everything burns but I guess that is a few years out now so okay, hooray for snow, but did I mention that I have Parkinson’s Disease which is a degenerative brain disease for which there is no cure but I’m not as bad off as many people with this condition and the good news is that I’m having brain surgery in a few weeks unless of course my dad who has happily lived until the age of 95 succumbs to this weird blood disorder called MDS which is a precursor to leukemia before then which I don’t think he’ll do but you never know.”
Which my mouth turns into me saying “fine.”
How am I doing, really?
Really, I’m fine. I have much to be thankful for - I’m white, well educated, gainfully employed and have great health insurance. And a great family, great friends, and a great home.
But I also have a degenerative brain disorder for which there is no cure, in the form of Parkinson’s Disease (PD). While PD is not great, I’m often reminded that it could be much worse. But it’s still a Thing that is with me constantly - an unavoidable awareness of when my next dose of meds will be needed, how to time meds with food (especially protein, which blocks their efficacy), how to time meds with exercise, a constant scanning of my physical and mental state to see what’s working and what’s not and so forth. There are many many many people in the world in the same boat - managing a chronic illness on a day to day, hour to hour, minute to minute basis. And it kind of sucks, but what else is there to do?
What there is to do, for me, is to have brain surgery. To reduce some of my PD symptoms, I am having a Deep Brain Stimulation (DBS) device installed in my brain which is meant to regulate nerve cell communication (vaguely similar to a pacemaker to regulate the heart). The good news is that DBS surgery is a well-established practice for PD patients (first performed in 1987) and the vast majority of those who undergo it experience significant reduction in key symptoms and enjoy improved quality of life.
I never thought I’d be at a point in my life that brain surgery would be something I’d be looking forward to, but here I am. Life is, if we are lucky, filled with rich and sometimes challenging experiences that offer learning and growth, that teach us humility and empathy, and remind us to be grateful for all the good times as they happen. I’ve never been more aware of this than I am right now.
Which brings me to my 95 year old Dad. His bone marrow is under attack by some sort of pre-leukemia thing and is no longer able to produce the necessary amount of blood cells needed for a healthy and active life. He, along with my mom and his oncologist, have agreed that he should not try to treat the issue with chemo. That would only make him feel terrible and is not likely to extend his life by much. As it is, his main symptom is fatigue. But, as he says, he has a comfortable bed where he can rest as needed. He’s had a long full life and all of his affairs are in order.
We do not know, cannot know, what is coming next. We only know that days are long and life is short, and we all need more kindness in our lives.
So - how am I? I’m fine. Everything is just fine.