Three Days Before DBS

I like my brain. We’ve had a fairly good relationship over the years.

It has generally served me well and has become more reliable with some teaching and training over the years. There are certain parts that are especially nice, the parts that put words together in interesting combinations, the parts that can convey feelings and images to others, the parts that entertain and find humor in many small and dark things, the parts that attempt to enter into someone else’s experience and project into another person’s  world.

Overall, I’m pretty happy with the relationship, and would like it to continue relatively unchanged, save some better- regulated dopamine production.

There are some frustrating bits, those that don’t follow directions or routine particularly well, those that avoid difficult emotions, and those that  get obsessed and overly fixated on jigsaw puzzles and annoying social interactions. Then there are the bits that decided to up and kill themselves, those dopamine producing bits whose value I greatly underestimated.

I’m not sure where they got the gumption, or who decided to assassinate them. It seems the Substantia Nigra needed better security but never put in the requisition order. That tragedy, this lack of dopamine and all its cascading consequences, brings us to where we are today. A day where I am facing Deep Brain Stimulation surgery in one week’s time.

Here is the raging debate that is occurring for me.  How can I bake a blueberry buckle, with blueberries picked from our garden, but still need brain surgery?

How can I drop off my 8 year old on her first day of 3rd grade, but still need brain surgery?  How can I drive 70 miles an hour singing CAN’T STOP The FEELING!” at the top of my lungs, but still need brain surgery? How can I write this piece, but still need brain surgery?

These questions with their seemingly unimpeachable logic hide the hours on the couch, shaking

the feeling I can’t stop

Can’t stop

Can’t

Stop

Stop

Stop

Go why don’t you!  Go on, go ahead, go for it!  That is what I said to my arm 8 years ago, when I found it wouldn’t follow my directives to pick up my infant daughter. That was 12 years after symptoms started, 8 years ago, 3 months before diagnosis.I can measure my diagnosis by my daughter’s age. She was exactly 9 months old when definitive word was given about what that “no go” arm was actually all about. Since then, these 8 years have been good ones, filled with love and challenge and growth, and more and more meds to keep the whole enterprise afloat.

Covid unmasked what was already becoming clear; it was time for something radical, as the roller coaster of on-off was more stomach turning than even I could handle. And that roller coaster takes place mostly on the couch, meaning it is decidedly un-fun for an energetic and curious 8 year old.

Making the decision sent me spiraling into a few weeks of depression and intense anxiety.

Was I really at this point? It seems like any sort of adaptive denial of having Parkinson’s becomes relatively impossible to sustain after you go and do something like stick electrodes into your head. I did a lot of grieving. I indulged in some self pity, processing how I had  this disease, of honest  truth telling to the self. I don’t think it can all take place at once.Maybe that’s just me, but I have needed to titrate things over the years, doing what is necessary to conserve my limited energy and to keep up with the life I’ve crafted.

There is lots of down time, meditation with jigsaw puzzle pieces, thousands and thousands of them to be accurate. And here I am, just about to head into the OR, to do DBS. I made the decision to do it awake, in order to avoid having general anesthesia but also becauseI’m curious about it and I imagine I will feel more in control, however illusory that may be.

The nurse at the pre-op screening asked me if my mood was appropriate. I said, I think so? What exactly is the appropriate mood for facing brain surgery? How would the greeting card industry handle this one? I figured a combination of excitement, hopefulness, sheer terror, and basic fear seemed to cover it, and I probably over elaborated for the nurse.

As a friend said, it’s a whole smushola of emotions – a made-up word seems especially appropriate to the circumstance.  

I’m not an overly optimistic “glass-half-full” kinda person – I’m more the “if the glass is filled with pee maybe better that it’s not half-full” kind of gal, whatever the label for that line of thinking might be.

So, I’m packing my bags with rocket science jokes, a healthy dose of curiosity about the process, an orange cyclist’s good luck cap from my downstairs neighbor, some Justin Timberlake, Chumbawamba, and New Order ‘80’s hits on the soundtrack, and, most importantly, a picture of my daughter, for she is the biggest reason to do this. As the lyrics in the song “Shake it Off”  say, “It’s like I’ve got this music / in my mind / saying it’s gonna to be alright”.