April 3, 2018
“You’ve got to keep your hope alive!” These are the words from a woman I know who has asked about Michael’s transplant. I had just told her that my hope around these medical treatments just isn’t there anymore. She, too, has struggled with a sick loved one and in their case, her hope has paid off.
As I walked away from her I realized that my first reaction was guilt for not being “hopeful” enough, that I’m being a bad spouse by not jumping on the Hope Train once again. But I’ve ridden that train, and I rode it hard during the first transplant, during the first chemo, during the subsequent chemo, and on and on. It’s taken me nowhere but into hopelessness. All of which makes me begin to question the underlying assumption that hope is good, is helpful, or is even necessary.
One thing I’m realizing is that hope is always about the future! We hope for some kind of better outcome and all hope is constructed on wishes for positive change in the nebulous time that is not now. Let me repeat that, it’s not Now! And finally, I’ve learned that the only time that really exists is this present moment. This one. The one that you’re using to read these words.
For the truth is, nothing is real other than this moment. Everything else is memory about the past or fantasy about the future. Most of the time we don’t stop to question the assumption about the goodness of hope, the necessity to feel that the future will be better. But what I’ve noticed is that hope knocks me out of the present moment and into a place of wishing, and if that wishing doesn’t come true, then what? Have I not hoped well enough? Or is Michael’s own hope somehow tainted? What happens when hoping just doesn’t work?
We believe we are seeding the future with our current thoughts. And certainly, it is important to have positive expectancy for the future. Things could get pretty dire if we fail to believe that our current sacrifices aren’t creating a better future down the road. But it is also important, and really more important, to have positive expectancy for the moment in which we find ourselves. For if we do not love this moment, this very moment, we are doomed.
Michael’s current stem cell transplant has made him terribly ill. His white count has plummeted and now he has no white blood cells to protect him from infection. I watch his heart monitor as he receives a platelet transfusion — sometimes its beats are even, sometimes they jump all over the place. It’s a precarious time that is filled with the mind-numbing boredom of longterm hospitalization punctuated by moments of horror. And no matter what I hope, it doesn’t change a thing!
So is my lack of hope a problem? For the opposite of hope is certainly a kind of despair, and god knows that none of us want to sink into despair. But perhaps this is a false dichotomy. Perhaps there are unnamed options outside of hope and despair. Perhaps there is a middle ground that has nothing to do with hope.
At this point, I’m searching fiercely for that middle ground. It’s located somewhere in a sense of the immediate and the neutral, located in a radical sense of accepting everything just as it is. It is not negativity or nihilism or denial. Rather it is a firm stance toward the goodness of the moment, toward an understanding that this moment is holy, that this moment is where it’s all happening, that this moment is the only thing we’ve got! And in this moment, the meaning is made.
The last line of Emily’s poem is the most mysterious for me: “and never in extremity it asked a crumb of me.” This doesn’t feel like the hope that I’ve nurtured in myself during these long months of Michael’s illness. For my hope has asked me for many crumbs. It has asked me to tend to this thing with feathers in the face of devastating disappointment. It has asked me to believe in a treatment that hasn’t worked, that hasn’t flown. Or maybe I just haven’t understood hope deeply enough, maybe I’ve clung to it too hard. But for me, I feel that Emily is speaking of Faith, not Hope.
I find that my faith is now anchored in believing that everything that is happening is for the Highest Good. This is a very hard faith to practice in the face of the death and destruction all of us can see around us now. It is a very hard faith to practice as one test after another comes back showing no progress in Michael’s illness. It is a very hard faith to practice as I watch my husband trying to take in some broth as his white blood count hovers at zero, and horrible diarrhea becomes the result. But it is the only faith I can muster — the faith that whether we can understand it or not, there is a force in the Universe that is always moving toward the highest evolutionary principle, toward the Highest Good.
In this Universal scheme we are less than a blink of God’s eye. Our individual lives are an experiment in evolution and ultimately, a test of our ability to love. The circumstances of this testing are more complex and manifold than any of us can ever grasp, but always we are held in love. This becomes my Faith in the underlying goodness of our lives, and in our deaths. And this faith is unshakable.
At this point, I’ve given up on hope and it feels like I’m taking a breath of sanity in an insane situation. I don’t believe in it anymore. I’ve clung to it and now I know that this is a mistake. Hope still flies through my mind many times a day, but I have learned to watch her feathery flutterings and come back to faith instead. It feels more solid and more real.
I still find myself hoping that Michael can continue to take in liquids, that he can continue to find his way through this maze of drugs and nausea and extreme exhaustion. But I also know that my hoping doesn’t change anything here, that in fact it can lead to hopelessness and loss of heart.
Instead I watch him eat the little bit that he can eat. I listen when he complains about his stomach and his gut. I respond to his moans. I touch him softly on the arm to let him know I’m here. And over and over, I let go of the future, let go of hope, and dwell in the love and faith that lies between us now in this desperate and sacred place.