My 2nd Year Anniversary

Beka - December 30 is my “big day.” It will be exactly 2 years since I had brain surgery for implantation of the DBS Activa System to control my dystonia. Seems to me there have been so many emotional, physical, and social adjustments to make over the last 2 years -- learning to walk again, eat pizza sitting at the dinner table, ride a bicycle in Aruba for 4 days non-stop (I actually hauled the bicycle into my hotel room every night just to be able to see it!), climb stairs, avoid sensory trick use, and just live.

But the last 2 years have also seen long work hours, DBS setting fluctuations, and the completion of NP graduate school. To a certain degree, I don’t even think I have really even thought about the effects of DBS and the surgery over the past 2 years. Last year, prior to my 1-year anniversary, I felt raw, awkward, and like ripping the pacemaker located in my right clavicle area OUT. I felt lost, as I couldn’t problem solve the device difficulties myself (that must be an ICU nurse characteristic!) when it got turned off by Walmart’s anti-theft detectors and I developed “overstimulation” side-effects. Optimism about the device turned into pessimism.

As December 30, 2006 closes in on me, I do wonder where I would be if the device had not been implanted? Would I have become depressed, isolated, and begun to live the life of a hermit? At implantation time, it was an easy choice to make as a treatment option, yet I also held very high expectations for the device that first year. May be a bit too high? Was it too much hope then? But, then may be over the last year I’ve come to realize that DBS is not a cure for dystonia. It is just a band-aid for a chronic illness. But a good, fresh, clean bandaid can sometimes offer great relief!