What to do with Hope

Original postcard with quote about 1000 reasons to despair I had coffee with a grief counselor yesterday and asked her what to do with  hope that comes unbidden when Larry has had a good night or two (or four as of today!!!)

She has many years of experience as a grief counselor and also as a full time caregiver to her husband in his late stages of Parkinson’s Disease and she is very wise.  She asked “what are you hoping for?”

I thought about it.  “More comfort for Larry.  Less gasping for air, less throat spasms.  Maybe even a reprieve from this pulmonary crisis for awhile, you know –  more good days.”

She smiled and gave me the best answer.

“Don’t try to manage it.  We all need hope.  Where would the human race be without hope?  You need hope – just to get through the days.”

She reassured me that my hopes were reasonable, tied to reality.  I wasn’t hoping for him to recover from his Multiple System Atrophy.  I wasn’t hoping for a cure.

I’ve been worried about my hope, my momentary relief and joy, when we have good hours, good nights.  That I was fooling myself.  That I was wanting the impossible.  That I needed to TAMP IT DOWN!

She said I needed hope to keep going.  But that the days would be up and down, up and down.  I had to take my sleep and my hope when I could get it and not expect things to be normal for a long time.  Not even a new normal.

I guess I worry that hope makes despair all the more painful.  That hope will inevitably cause disappointment.    Of course, disappointment will be the least of the pain I feel.  It’s just another shade of grief.  Perhaps hope is the space in between those moments of grief.

I asked Larry how much time he thought he had.  He shrugged.  “A day?  Two years?”  I asked if his body felt like he had two years and he said no.  “Maybe 6 months.”

“What is it that makes a day worthwhile?” I asked him.  “You, family,” he answered.”

So my hope is that his days are worthwhile.  That our days are worthwhile.  That we can find the moments in the hard days that are worthwhile.   That I don’t have to do anything with my hope – we can live with hope, and cope with whatever reality brings us.