For those wondering how the prospect of two “awake” brain surgeries becomes palatable, let’s consider my relentless left foot, which seizes every small step as an opportunity to insist on an arduous detour. Walking takes on a whole new “twist” when the ever-present intervening destination is your next forward-intending movement. Even the shortest sojourn with my puppy becomes a true labor of love.
The upper echelons of the thermostat – even relatively moderate temperatures – stand amongst my triggers. At the onset of spring, exhaustion settles in for a multi-season stay, sentencing me to a summer of heavy breathing punctuated with plentiful naps. Ambulating ceases to be a means to an end and becomes an all-consuming focus, draining every ounce of my energy at the speed of light. As an added bonus, my tortured summer strolls invite back pain to settle in for an extended stay.
Surgeries anyone? Sign me up!
Posted in Life
Tagged DBS, Deep brain stimulation, Dystonia, Fatigue, Force, Health, Involuntary movement, Movement disorder, Neurological disorder, Puppy, Puppy love, Stress, Summer, Walker, Walking aid
“May the Force be with you” sums things up pretty well except for one slight detail: this ever-present “Force” usually goes against me. I lead the Jedi Knights in an epic battle waged for control of my Universe, the Dystonic Sith summoning the “dark side” to seize power, gaining strength by preying upon my negative emotions.
Ironic inconsistency is expected. When I visit my neurologist, my brain somehow instructs my muscles to behave. I pace the hallways with an entourage of physicians, silently willing my muscles to act up and take responsibility for their persistent shenanigans. On dates – talk about nerves – I tip to the other end of the spectrum. Maybe next time, I should invite my neurologist to join us for drinks. Murphy’s Law meet my Dystonia!
The unpredictable nature of Dystonia is a constant thorn in my side. Stairs pose an eternal question mark. Walking confronts me with a never-ending surprise party. One minute I’m strolling prettily, nary a care. Then I remember my legs – shazam, we have movement. Occasionally, my foot abruptly decides to make an illegal U-turn, leaving me stranded on a street corner waiting for my yin to find its yang. If only I could send my limbs to Driver’s Ed to reduce the Dystonia points on my license!