We walk in a shadow and at it's core, losing independence means Russ is having trouble managing his day to day life; having trouble with physical, social and emotional parts of life. Being witness to this for me and living it for him leaves a hollowness that reverberates within each of us. It is an on again, off again feeling of loneliness. It is a shadow as company.
We want life to be uncomplicated. Yet for us there is the difficulty of navigating our new path into oneness, cutting out much of our independence to make this work. At times this is physically and emotionally exhausting for both of us. One or the other of us will demand an independent move, our choice or our need to be the one and only way to live that moment. It sounds so basic, yet it is these times that are at the heart of making life work for us. It is at these times that we must embrace the life we have been given with Parkinson's, knowing we must give up something for the better of the whole. That is what it means to live as one.
No matter how much changes, I seem to need to learn the same lesson over and over. But the truth is, there is no roadmap for this journey. We have to navigate this trip on our own.
It is no longer safe for Russ to be out on his bike alone. After a couple of poor choices we decided to have someone ride with him or be out walking. As he zipped about the neighborhood yesterday, I followed behind on my bike. Coasting around a corner, neighbor Barb was walking her dog Mia. She greeted Russ with a "Hi Russ" and then to me "It's the shadow!" It was an apt description of my day. I had been feeling very insignificant and unwanted. Independence was reigning in Russ' heart. It was a day for him to exert his independence, even if it made me fearful or angry... I was flailing and he made no notice. I was hurt, he made no notice. I was 'the shadow'.
Bottom line is that there aren't any easy answers or quick fixes to help either of us deal with this life of oneness. It comes down to the constant reminder to ourselves to be patient, caring and encouraging to the other, to help each other stay out of the shadow moving forward to enrich the other's life as best as we can.