Today I pondered truth, walking in truth and uniting truth with my heart.
Truth is sometimes hard for people to accept. I am finding that especially so when it comes to Russ' Parkinson's disease. I sense many people feel I am criticizing them for not understanding what it is like to live with Parkinson's. Sadly, I am told I am a bit brash. That points to the truth, that the misunderstanding goes both ways. Uncomfortable truths about PD and living with it are just that, uncomfortable. So how do I share 'Our Truth'? It has become a personal crusade for me, hoping to lead people to the truth that life can be hard... and that's OK. If I tell you it has been a hard day or Russ fell or we just reached a new challenge, don't worry and feel uncomfortable... it's life. We can do this.
In response to your worry:
Dear Person(s),
I love my husband. We have aged 40+ years since we married and our history trails along with us, reminding us always that life is a journey, sometimes with glorious views and other times shadowing us in a bit of darkness. Darkness fell when Russ was diagnosed, but we have learned to walk in the light and the truth on most days. No one is perfect so we understand the path of least resistance, avoidance. Some days avoidance is a masterful plan!
When we met he was tall, lean and favored short shorts. He was at his best outdoors, all about skiing, camping, canoeing and picnicking. He could make anything we did outdoors an occasion, a party of sorts. Together we learned to play tennis, spending many hours on the courts each week. We loved our summer week on Isle LaMotte, cruising the back roads of Vermont in the open Jeep, our many trips abroad to hike and our weekend jaunts to nearby B&Bs.
Russ was a man of action, but now our tables have turned. Action these days are wrapped in his determination to stay mobile. He has 3 exercise classes a week, PT at least once a week and daily bike riding, either inside on his spin bike or outside cruising the neighborhood on his tricycle. His resolve and motivation are inspiring.
It is what seems simple to others that flummoxes many people when they are trying to relate to us in our new world. Going out to eat. Visiting a neighbor and navigating multiple steps. Wandering through a busy store like Home Depot, navigating displays, fast kids and people so focused on their search they do not see the wheelchair. Just having ready access to a bathroom is huge. Travel. Renting an appropriate vacation rental. Truly, sometimes it is just easier to stay home.
I know you want to understand and you ask "How are you? How is Russ?" A heartfelt, real response can be difficult to handle. Truth might make you feel vulnerable and somehow inadequate. But my behavior might interfere with your understanding; it may be me that gets in the way as I walk this walk with Russ, I sometimes fall into a negative space and perhaps it gives you compassion fatigue and it seems more plausible to distance yourself rather than risk being dragged down with me.
So I say to you dear person(s), I know you are trying, I am trying and Russ is trying. I know we are all on a spinning wheel of judgment, but really, what's the risk? I believe I have gotten to a place where judgment is not the issue. It is that I can make others uncomfortable. My crusade is in fact to help others know there's no good or bad, no right or wrong. It is what it is and our only option is to accept it.
We are just one face, one couple facing an incurable illness that will get worse over time. Believe me when I say, your presence in our lives matters if you can bridge the uncomfortable..
Peace,
Linda