“Hope” is the thing with feathers –
That perches in the soul –
And sings the tune without the words –
And never stops – at all –
And sweetest – in the Gale – is heard –
And sore must be the storm –
That could abash the little Bird
That kept so many warm –
I’ve heard it in the chillest land –
And on the strangest Sea –
Yet – never – in Extremity,
It asked a crumb – of me.
There are some days I just want all of this to be over. Seeing Sam suffer is way too hard. On one Facebook support group for those of us who care for someone with ALS, I often see many caregivers posting that they don’t know which would be worse: to outlive the person they are caring for or to have the person they are caring for go before them.
What a thorny fear to acknowledge. It just pricks you with guilt and anxiety and fear of judgment all at once. And only on our worst days do we even dare to type such despairing thoughts into message boards filled with strangers who feel more like friends than our friends, more like family than our family. Maybe it’s just that these people, like any good support group, understand that screaming, crying, and wanting to throw the dishes is all a part of the process. Caregivers aren’t glorified and neither are their burdens dismissed.
But I can’t claim to speak for every caregiver. Each situation, each person, each progression is completely unique. I only know that shades of my former self are being shed, willingly and unwillingly. As Sam slides deeper into himself, I follow him. We recede simultaneously but not equally.
And at the same time we are suspended by the thing with feathers that gives us the song that just won’t quit. The thing that won’t let us slide into despair — that little bird that is there when we least expect it: hope.
Hope is one of the most bewildering things to me. What it is? Where does it come from? What exactly am I hoping for? And most importantly, why do I hope despite it all?
I don’t really have hard and fast answers to those questions, but I have to believe that hope isn’t a feeling as much as an action. I may not understand the little bird that sings his song from the depths of my heart on even my darkest days, but I choose to call him back, to let him nest in the landscape of my soul. That is my choice; the rest is part of the great mystery.