Expect the Unexpected

A friend told me today that he is scheduled to have deep brain stimulation for his Parkinson’s in March. We’ve been talking about it a lot since he found out I have had DBS. Today he asked me what I would tell him if I could just tell him one thing about the surgery. I have probably talked to 20 people who’ve had DBS in the past and I’ve heard 20 different stories. So I was at a loss of what to tell him. So I answered his question of the question of my own.

“What do you think it is going to be like and what are you most worried about?” I asked him not to answer out loud, but to think about his preconceptions and concerns.

After a minute or two, I said, “OK, now get rid of all those thoughts and feelings because it’s nothing like that.” I explained to him that everyone I knew who has had DBS has had a different experience with the procedure. Much like if you meet one person with Parkinson’s you’ve met one person with Parkinson’s. If you meet one person who had DBS… Anyways, you get it.

In my case, I was so worried about pain after the surgery that I almost forgot that they were going to drill holes in my skull and put wires in my brain. Of course, there are no pain receptors in the brain or skull so I really needed to worry about was the skin on my scalp. That was no big deal once the surgery was done.

Maybe I needed to make it worse when I thought about it in order to make it easier to live through. Perhaps I should’ve told my friend to think about his worries and fears and then tell him multiply them by 10.  But that wasn’t my experience nor that of the friends that I know who have had DBS.

Of course, what he should be thinking about is what will happen once they turn on the brain stimulator… I am sure that question will come sometime between now and March.