Everyone always says "take care of yourself!". I have a really rough time with that comment; it's maddening. I understand the sentiment behind the thought; that by taking care of myself, I am better prepared to love and care for Russ. Well some days that just is beyond me. Some days wine is a better answer!
But what ARE people thinking when they say 'you're impressive'? I can only imagine. I can only imagine what their eyes see. Do they see my unknowing grasp of PD or utter confusion? Do they see the need to problem solve an unpleasant situation? Do they see the struggle to be complete in my questions for the doctor? Or I wonder if they see how dramatically our home has changed to accommodate PD? Is that what they see or is it our smiles in greeting, our willingness to adapt, or our living example of living an unwanted life change?
What does impressive mean to me? It means we are teaching one another the skills we need to move from one day to the next and from one declining part to the next. It means adjusting to our cultural shift of slowing down the pace of our days. It means not as many spontaneous social engagements because it is so much easier to stay home (and so much easier for others not to invite us). It means accepting that we are unique, making an effort to bless one another in ways unseen as we process each new PD symptom.
Our life is, by nature, an emotional and often difficult path. It is a 'new' partnership born of need. He is still my confidant, my advisor, my best friend and the person I share my deepest thoughts with. We are in this together and if that means we are impressive, than so be it!
I have decided not to expend too much energy trying to help others understand, except through this blog. When folks ask after Russ or myself I say "I/we are goodish". I hope that implies we are not the pretty norm of health and contentment. I feel certain that unless someone walked our path they can't quite comprehend it.
I do believe though that the strength and resilience and ability to go on each day comes from both of us digging deep and remembering life before all this happened; life before PD, grasping the memories of who we were. Is it difficult at times? You bet. But the folks who say "you're impressive" may just be the folks who know at some point in life's future, their time will come.... as caregiver or patient.
This song came on as I was writing. Brought tears... love it.
"I can only Imagine" by MercyMe (Google and listen)
I can only imagine what it will be like
When I walk, by your side
I can only imagine what my eyes will see
When your face is before me
I can only imagine
I can only imagine
Surrounded by You glory
What will my heart feel
Will I dance for you Jesus
Or in awe of You be still
Will I stand in your presence
Or to my knees will I fall
Will I sing hallelujah
Will I be able to speak at all
I can only imagine
I can only imagine
I can only imagine when that day comes
When I find myself standing in the Son
I can only imagine when all I would do is forever
Forever worship You
I can only imagine
I can only imagine
Surrounded by Your glory
What will my heart feel
Will I dance for You, Jesus
Or in awe of you be still
Will I stand in your presence
Or to my knees will I fall
Will I sing hallelujah
Will I be able to speak at all
I can only imagine
I can only imagine hey ya ah