Sometimes I think of life as a journey, a journey with peaks and valleys, breathtakingly beautiful views, dark forests, multi-lane motorways and winding paths. There are storms, quiet rain and sunshine. A journey through life where, most of the time, I am the one reading the map and choosing the road, choosing the challenge and choosing the place.
When I received my Parkinson’s diagnosis, my journey changed. My map was redrawn, the conditions changed, and suddenly I found myself in entirely new terrain, in a completely unknown place.
Without being able to do anything, I watched as everything I had planned for my journey and drawn onto my map disappeared, was erased, as if life had made a very sudden and very sharp turn. Everything familiar was pulled away, disappeared or became hidden, and something completely new and unknown took its place. It was as if life had stolen my travel plans and, without any consideration, changed them according to its own will.
What happened there and then, in that moment, was that everything I knew about my body and my health was called into question, as was everything I had planned and imagined for the future. Questions, thoughts, knowledge, emotions — and at the centre of it all was the question: “What happens now?”
What happens now?
“What happens now?” A simple little question that kept appearing in my thoughts. The question also seemed to manage the art of touching everything, or at least most things.
“What happens now to my life? What happens now to my work? To my career? What happens now to my family? To friends? To leisure activities, to travel? What happens now to my health? What happens when I tell people? Or if I do not tell them? What happens now?”
The question returned again and again, and it demanded answers. But were there any?
The question, in all its simplicity and all its complexity, became the driving force I needed in order to learn more about Parkinson’s and how the disease would affect me, both now and in the future. The way the question was phrased made me actively search for answers. It made me find out what different treatment options existed and what they involved. The information was not always particularly uplifting, but still.
I met the experts in the Parkinson’s team, I Googled and I read. I became a member of the local Parkinson’s association and found a strong sense of community with people who were struggling with the same challenges as I was.
I realised that I was not alone.
The answers gave me knowledge
“What happens now?” It was, and is, a short and seemingly simple question — just three words. But the answers I found gave me knowledge, and with that knowledge came the strength to take back control of my life, to navigate and steer my journey.
They were answers that taught me about life in general and life with Parkinson’s in particular — what it means and what can happen. Answers that made, and still make, it possible for me to continue choosing to live, to dream, to set goals and work towards them.
The answers also taught me to listen with a different awareness to both body and mind, and to dare to choose well-being. They taught me that there will be moments that are difficult, moments when nothing works the way I want or wish.
But they also told me that yes, Parkinson’s affects your life, but remember that you are still the same person. You are you, and Parkinson’s is not your whole life, but only an uninvited fellow traveller.
Continuing along the chosen path
“What happens now?” So here I am now, on my journey in the middle of My life with Parkinson’s, and I will not deny that it has been, and still is, a difficult and at times frightening journey. Life with Parkinson’s is not easy, and at times the changes Parkinson’s has brought have been challenging for me.
There are days when I feel frustrated by my limitations and wish that things could be different. But at the same time, Parkinson’s has given me experiences, encounters, lessons and friends that I would not want to be without. In addition, Parkinson’s has given me an inner strength and a power I did not know I had.
I also know that I have wonderful people around me who believe in me and support me when things are difficult.
Parkinson’s means an unknown future for me
“What happens now?” is probably a question that will follow me through life as my Parkinson’s changes. For me, the future is unknown, and I do not know which road my life will take. But I choose to embrace life with open arms and live, because it is my life.
I continue my journey, and we steer together — my Parkinson’s and I — looking with curiosity towards whatever waits around the corner. Because I believe that no matter what happens, it is always possible to find a new direction on the map, and that there is an unexplored road there.
With warmth on a rainy May evening on the West Coast,
Cecilia Qwinth
My name is Cecilia Qwinth, and I wrote this post. I live on the West Coast, with my partner and two adult children. Our family also includes four four-legged companions: two little furballs that I usually call Lillkatt and Storkatt, and two slightly larger furry animals with soft muzzles and kind eyes — the family’s two horses.
I was 53 years old when I received my Parkinson’s diagnosis. Now my Parkinson’s and I have lived together for five years. They have been difficult years, with both peaks and valleys. The most important lesson I have learned during these years is never to give up, whether it is side effects from medication, difficult Parkinson’s symptoms or something else causing problems.
Even though Parkinson’s has forced me to rethink and choose new paths in life, it has also opened doors and given me opportunities and experiences I would never otherwise have had. So Parkinson’s is a difficult bastard, but I intend to hang in there and experience as much as possible for as long as I can.
You can find more posts on my blog: My life with Parkinson’s
www.cicciqwinth.com
If you would like to know more about me: parkinsonpower.com
www.parkinsonpower.com