Here Be Dragons

My Deep Brain Stimulation consultation begins with physical therapy tomorrow at 9 a.m. tomorrow morning; precisely 12 hours from my last dose of levodopa (a controlled release).

Mercifully, this means I won’t be as horribly off as I was expecting, but I’ll probably wake up pretty stiff at about 5 a.m., and further decline from there so I’m not expecting I’ll enjoy myself much. After that I get to take my morning dose before heading to a speech assessment with an ear nose and throat doctor at 11 a.m. to wrap up the first day’s appointments.

I meet my surgeon on Tuesday at 10 a.m. OHSU’s Dr. Kim Burchiel is not only the first American surgeon to perform DBS, he’s also leading the charge on performing the procedure asleep. I don’t really have many questions for him at this point honestly; I’m prepared to have this done for good or ill.

Physical therapy gets to test my movement again, this time while I’m on at 11. I then have a neuropsychological evaluation where they will be looking for cognitive difficulties and assessing general emotional and psychological stability. This is perhaps the biggest hurdle between me and surgery (not counting insurance), but I expect to clear it. We’ll wrap up by checking in with my neurologist at OHSU to determine a course of action with medication as we prepare for any future plans.

When it comes to Christmas my two front teeth can get bent — all I want is to brain surgery!

Brush aside the glib attitude and you’ll uncover the miasma of emotions I’m lost in as we move forward with a surgery that will almost certainly change my life.

Any surgery carries risk, and while DBS is relatively low-risk for a major surgery I could have a stroke or die in the OR. Perhaps even more distasteful is the prospect of infection; to make it through the procedure only for it to all have to come out so I can recover and do it all again. Even if I make it through surgery and initial recovery I could suffer psychological problems or deterioration in my speech. I may have no result at all positive or negative.

So am I afraid? Damn right I am! But I’m not just afraid of the bad things that may happen. No, I’m every bit as fearful of what happens if everything goes well. Does that seem silly?

You see, it’s uncharted water that I fear the most, and a positive result leaves me with nothing but deep seas as far as the eye can see.

They say the biggest risk of DBS is that the patient will expect too much and be disappointed, so I’ve tried to keep my expectations modest. My doctors at UW Medicine have told me that the other PARK2 patient they have treated was able to live fairly well into her 50s with DBS. While she is no longer doing particularly well these days, I expect I’ll be given about this much time as well. Who knows? I could get longer as better treatments continue to come, and I may even get lucky enough to see a cure within my lifetime. I am fairly confident that I will be able to return to work full-time eventually, perhaps as a technical writer, or maybe even a DBS sales representative for Medtronic. Finally, I expect that I will be able to publish a book of photos and stories exploring what it is like to live with Juvenile Onset Parkinson’s Disease. Too much? Perhaps, but fighting this disease has shown me how much I can do when given even an inch. I expect more predictable ons at the very least, so even if my results fall short of miraculous I’ll grit through it to make these things happen.

But how physically restorative will the surgery be? Jasmine has seen incredible results in the side of her body that has been stimulated so far, and considering how much worse off she was what kind of benefits can I reasonably expect? Will I play tennis at a high level again? Will I be able to once again push myself in a weight room? Will I be able to make love without fear of my body betraying me?

This uncertainty has been dreadful, and as I’ve walked through the valley of the shadow of death, the air thick with fear and doubt, I have feared evil. After all the load is heavy, and I am so very weak.

As more or less a lifelong atheist my few genuine experiences of faith have varied from the silly to the sublime. A missal ad proclaiming “God is calling YOU to play Bass” led me to joining a worship band which helped me fight through severe depression during my senior year of high school. This journey led me to become a baptized and confirmed member of the Cweatholic Church and culminated in the most serene, peaceful and fleeting moment of understanding I’ve ever experienced.

At this stage in my journey with Parkinson’s I’m beginning to see a greater force at work. Something guided my hand to take levodopa instead of my life when I was at my lowest once, and something brought Jasmine and I together in this journey when I was again at my lowest.

It seems silly to say that she saved my life, but she has. When I was about to succumb she extended a hand and invited me to walk with her through the darkness. As we’ve walked this long and winding path of this disease we’ve not only relied on each other for support, we’ve actually learned to enjoy the journey because we’re together.

But while we share dreams of being together each day brings us closer to the edge (our surgeries may end up falling within weeks or even days of each other). As we prepare to take the leap together we’re filled with faith that everything is going to work out.

After all, when it comes to Parkinson’s all you need is love — and sometimes a few other drugs.