52 Week Smartphone Challenge on Island in the Net by Khürt Williams

N E W • 52 Week Smartphone Challenge is a new challenge by Khürt Williams. The rules are simple: there’s a ‘theme’ every week and your photo has to be taken with a smartphone. For the fine print see the linked post. This first week’s challenge is to post a self-portrait that doesn’t actually shows yourself but does convey your personality…

N E W • ‘self-portrait’ • Taken in Rotterdam with my iPhone XR back camera 4.25mm f/1.8 a few days agoAs a few of you may know, I was diagnosed with Parkinson’s Disease (PD) 15 years ago. If there is one constant that marks this disease, it is the change for the worse. Roughly 2 years ago I was labelled a Phase 4 patient (out of a maximum of 5 stages) which means as much that I was almost paralyzed and that my neurologist at the time deemed it irresponsible to be living on my own. The one good thing he did was to convince me to undergo a Deep Brain Stimulation (DBS) where they drill a hole on either side of your skull and plant to electrodes deep inside the brain. If you want to know how it works just use the above link.

N E W

After a brutal day in surgery (6 hours), of which most of the time I was fully conscious and awake, the miracle I had been promised happened. It felt like a re-birth from the next morning onwards. The N E W me astonished not only myself, but my girlfriend, my mother and brother, my 2 kids and some close friends as well. I could walk again without my cane (never touched it again since that day), my tremors had gone as had most other physical symptoms such as ‘freezing’. I felt, and still feel N E W. Reborn. Lucky to wake up every morning. Despite the fact that the DBS only halted the physical symptoms of PD. The disease itself keeps wrecking havoc in my brain.

Bumpy road to this sense of N E W-ness

The past two years however have had some deep lows. They have ‘finished’ the fine tuning the software responsible for firing the electric impulses only a few weeks ago. I have significantly lost out in my capability to communicate as my speech has become slow, slurry and sloppy. I can still not write, and typing goes at a snail’s pace. Furthermore I, but predominantly my girlfriend, have suffered the backlash of my short-fuse in terms of temperament (for which I’m eternally sorry). This probably was a combination of my impatient nature, which was fueled to an unacceptable level by part of the pills I still have to take daily.

To cut a long story short, my personality is slowly becoming N E W as well, as PD rages on. And not everything is rosy. To paraphrase Brad Pitt whose last words as a dying IRA-terrorist in the movie Patriot were: ‘Ay laddy, this is not an American movie. It doesn’t have a happy ending.‘

I am determined to add ‘…yet‘.

For a more lighthearted post see for instance this one.