Thursday, 20 February 2014

Called home

I've said it before, perhaps not in so many words, but there is something special about having Parkinson's. And it has nothing to do with the manifold indignities of the condition itself, its capacity to test everything you hold dear to destruction, or its shameless pickpocketing of your mental and physical abilities. No, these are merely the price you pay to be a part of what you might almost considered to be, in Parkinson's terms, the rapture.

I have long held the view that life has a habit of equalising happiness and sadness, pleasure and pain, joy and despair. And for everything this hateful condition has taken away from me, it has given me recompense in that most valuable currency of all -- friendship.

I have made friends that I know will stay with me for the rest of my life. Who are they? They come from far and wide -- from Berwick, Stockholm, Hexham, Australia, Texas, Vancouver, Norfolk, Tennessee, Arizona, New England, Pennsylvania, Manchester, North London, Sri Lanka, Hungary, Gravesend, Sarratt, Pewsey, Malaysia and beyond. They are the Viking, the Angel of the North, the Southern Belle, Lola, The Butcher, the Walker, the Battler and more.

They are the network for my survival, just as I hope I may be part of theirs. They brighten my day and sing me to sleep at night. We are the children of the night and daytime sprites. We tell each other the truths we need to hear and the lies we hope to hear. We watch each other's backs and walk in each others footsteps. We build sand castles on that Parkinson's beach and watch as, one by one, the sea takes them from us. We dry each others' tears and mop each other's brows. We chase away each others' fears and share each other's joy. We bandage each other's wounds.

We are a family. We bicker, we squabble, we hug, we treasure. Some think, some act, some talk, some listen. We all share. And we all dream.

We dream of the day when we'll be delivered from this pestilence. The day when our sandcastles are not lost to the tide. The day when we will stand on that beach, and hold hands, our eyes screwed tight against the sunset and feel the warmth of the sun on our faces. That day when we will wash our hands clean of every word we wrote, every trial we endured, every step we took to bring us to this place. The day when we are called home.

People with Parkinson's are lucky. We have two families. We are blessed.


  1. We are a part of your family. When my husband was diagnosed, he said, ”Well, we simpy move on.” He got mercury poisonsing while working for Diamond Shamrock at one of their refineries in Padena, Texas, as a summer college job. When they tested him and discovered the ligh levels of mercury, they told him,”Oh it will never bother you...just something you will carry in your body.” He was 22 years old. Little did he know that it would end a very success career 8 years early, and change our lives forever. He has had DBS 5 times....3 unsuccessfully. We have made it our mission to encourage others who deal with this demon. We will never give up hope for a cure.