This is an email to my Parkinson's nurse. For once in my life I managed to find the right words to convey my message. It's so frustrating when it doesn't quite work
Amanda
I live in a very dark place a this moment in time. I am surrounded by a wonderful talented team of caring human beings who are doing all you and they can to ease my suffering. I have to dig deep inside myself to endure and survive and I will. I won't surrender my life. It will have to be torn from me. I shall fight to my last breath.
To endure one needs hope. To maintain that hope I need a focus. When my resolve weakens I have to reinforce that focus with the belief that I have a chance that I can catch a glimpse of something better, if only for a fleeting moment. I cannot continue to add to my pain and misery any more with the uncontrollable misery that the medications are constantly inflicting on me. I firmly believe that my best chance of achieving even the minutest improvement in the quality of my life is to be allowed to undergo DBS. That may work, it may not. What I would ask you and your wonderful colleagues is this. There is no fall back position for me with the medications. We cannot undo what is done. If this is what my existence continues to consist of then so be it. Over the course of my illness I have paid a huge price in pain and suffering. We all do, that is the cycle of life. I have endured and suffered and survived untold misery, mostly caused by the medications ,not the illness. I have no problem with that.
Life is all about choices. I have always accepted the Iconsequences of my decisions good or bad. I've lived the most wonderful life anybody could hope for. It's got a few dents in it now but it's still here.
I am as sane and lucid and bright as the rest of you. The potential benefits and drawbacks of the operation are to a certain extent quantifiable. It is possible to make predictions as to the risks and outcomes.
Not so with drugs. My sentient being knows that enough is enough. It's been a hell of a rollercoaster ride but its over. We all can only go so far and I'm at my limit. So be it.
If the operation is not an option so be able it then I will continue to live the rest of my life as I do now.
With love
Steve x