Sometimes life throws us into situations which completely overwhelm us, no matter how resilient we once thought we were. All reason and logic disappears and the things we know in our heads – practical things we know we should do, such as looking after ourselves or asking for help – and even the things which we normally rely on, such as our faith (for those of us who are religious) – just seem to desert us. We feel like crying or screaming, but we don’t even have the energy.
This can leave us feeling completely lost. Shipwrecked. All at sea. Alone.
Shipwrecked. Like I’m broken. And my brain is partly broken. Because it doesn’t produce enough dopamine, I can’t function like I should be able to. It takes all my energy just to lift my fork to my mouth to eat my food. It’s a massive effort for me to speak loudly enough for anyone to hear. My sleep is disturbed. I feel constantly exhausted. I can’t even feel sad or anxious – perfectly normal emotions in response to some situations I find myself in – without my tremor kicking off. And I know it’s not going to get better. It’s not even going to stay the same. In fact, as Parkinson’s is a progressive condition, it will probably get worse. I fear that I won’t be able to cope if and when that happens.
“Shipwrecked, I’m all at sea, no lighthouse guiding me” All at sea, 3 Bucket Jones
The opening line of this beautiful song by my choir leader Gitika Partington‘s band 3 Bucket Jones sums up how I feel at times.
Shipwrecked. All at sea. Lost.
When we feel this way, we need to look for any small glimmer of light to guide us. We may find ourselves shipwrecked and searching for a while before we find it, but we need to believe that the lighthouse is there and that we will find it.
Those glimmers of light can come in unexpected forms. A chat with an understanding friend. A long walk on the seafront. A distraction such as work – making me focus on different challenges. Focussing on something I can do gives me back a little confidence. Being by the sea gives me a new perspective. I don’t feel quite as alone. I start to see things differently and I begin to believe that maybe I would be able to cope. I remind myself that I have a choice over how I deal with my Parkinson’s. And that I can choose how I respond to every situation. I also remind myself that even though I may be a little broken, I still have a lot to be grateful for. The glimmers of light become a bit brighter, and in the distance I can see the lighthouse standing tall and guiding me in the right direction. Away from darkness and fear. Towards light and hope.
Living with Parkinson's 