July 13, 2018
I was walking the dog this evening when I woman I barely know stops me to express her condolences. But it rapidly becomes clear that what she really wants to say is that her husband has just been diagnosed with pancreatic cancer.
“Oh, I’m so sorry,” I say, “I know what kind of a strain that can be.”
“Tell me,” she says, “tell me what it’s really like.”
I am a bit taken aback since no one has asked me this in exactly this way, and I know she is asking from a place of real need, a place of real questioning.
As I continue my walk home I realize that I haven’t yet told the truth, or at least, not the whole truth as I now know it, of my own experience. For truth, like everything in life, has many layers and many permutations. It changes and grows as life reveals itself. I’ve been waiting for the right time, and now it appears. For more than two years I’ve been telling a partial truth but it is only now that I can begin to tell more of it. I promised Michael that I wouldn’t say much of this until after he was dead and I have honored that promise. But I have to tell the truth, for what good is any writing if the truth isn’t told?
For the past thirty-five years, I have been Michael’s partner in relative health and then, over two years ago, I became his partner in mortal illness. And for more than two years, I am his caregiver. Endless trips to the doctor, endless chemotherapy treatments, endless time in his hospital room, endless worry and stress, and endless pain of different sorts for both of us.
His body degenerates markedly. System after system begins to fail, and then fails even more. It’s hard for him to eat, to walk, to move, to sleep. He has horrible breath, his skin and muscles and teeth are breaking down, and perhaps worst of all, he’s impotent. So, we leave our lovership behind, and become more of what we’ve always been. We are best friends, living together while one of us is dying.
After more than a year of no progress with his illness, my thoughts grow darker. One of the horrors is that I find myself wishing for his death. Several friends say he is hanging on to life for me. I’m not sure if this is true, but now there are times when I close my door, sob uncontrollably, and tell his spirit it’s ok to let go. I tell his higher self that I’ll be fine, that I can make it without him, that he doesn’t need to worry about me. And maybe he’s hanging on for me, or maybe it’s for something else, something unnameable. He continues to search for a life purpose and even though he doesn’t find one, he hangs on.
The truth of caregiving, and the truth of a long dying, is that those who are closest get angry and scared and worried and burned out. The truth is that as a caregiver, I feel guilty that I can’t live up to the very real burden of caring that is placed upon me. The truth of a long dying is that I am carrying a level of burden that only those others who have endured it can understand.
For one of the heaviest burdens is supporting a person who may not be ready to look at their dying, their approaching death, and the enormous toll on those who love them. And the truth of my caregiving, the one I feel the most guilt about, is that there are times when I think about walking away. Michael continues to stubbornly project a future that lasts for five to seven more years of what we are enduring. And because I always have, I believe in his force of will, his ability to manifest, and seven more years of living together in this half-life, feels unsustainable to me, feels literally, like a living death.
Finally, in a moment of clarity and pain, I tell him that I can’t do “this” for another seven years, that I will always take care of him, but I might find another house to live in, another place to stay. I know this hurts him which engenders even more guilt, but I feel I will collapse into a lesser self if I don’t say it, if I don’t tell this level of truth. But in spite of this, I don’t leave. I can’t leave. As much as I would sometimes like to leave, I must be here for my friend. Still, it is almost unbearable.
The two years begin to feel endless. He tries not to drag me down, though I am dragged down nonetheless. He is sick and his body is literally falling apart. But in spite of this, I admire him. For the most part, he suffers well. He keeps going, keeps believing, keeps trying to do everything he can to get better. At some point last December, we are so close that I have dropped any thought of leaving him and I tell him this. I am fully committed to being with him to the end, whenever that is. There is a new level of trust and intimacy between us, and I’m ready to endure whatever life may bring.
Regardless, his treatment isn’t working and he’s not improving. At our January hospital appointment, a “salvage transplant” is offered. After several worried days, Michael decides not to pursue it. He says there is no data to support it. I am so relieved! I realize I haven’t been breathing, dreading all that another transplant would mean. Finally, I can take a breath.
We leave for Florida for a month and begin to make plans for his death. It is an excruciating time between us. And it is a time for deep healing – a time when everything is said, when all the love and pain and fear are told and known. In some ways, we are the closest we’ve ever been. We come home with my belief that we are now on the road to Michael’s long degenerative death.
Then, at our next medical appointment in March, the doctor dangles a second stem cell transplant in front of him again. The doctor tells Michael it may “improve his quality of life.” These seem to be the magic words and when the doctor leaves the room for a moment, Michael literally whirls his head toward me with the most intense look I’ve ever seen. He wants this transplant! Even though he said he didn’t want it two months ago, now he wants it.
The doctor re-enters the room and I ask the pointed questions that Michael isn’t asking, the questions about the potential effects of the second transplant.
“Will the swelling in his tongue go away so that he can eat more easily?” “No.”
“Will the swelling in his legs improve?” “No.”
“Will his skin improve?” “No.”
“Will the deposits in his heart dissolve?” “No.”
“Will the deposits in other parts of his body go away?” “No.”
“Will his impotence disappear?” “No.”
“So, what will get better?” “It is likely that he will have more energy.”
I am appalled. I think to myself that this isn’t worth risking what life he has left. But Michael wants this, and as I sit in numbed and shocked awareness, he agrees to another transplant.
Another transplant, after I thought we’d spent the past month coming to peace with his dying. Another transplant, meaning weeks in the hospital while he clings to a slim thread of hope and life. Another transplant, which may literally kill him but which offers the possibility of “more energy.” Another transplant. It feels foolish and stupid and wrong, and then I am angry. I want to scream at him, “Can’t you see you are dying? Can’t we just get on with it?”
But I don’t. He can’t see it. Not yet. It’s too much to believe, too much to take in. So, I agree to help him. I agree to back him up as completely as I can.
So, this caregiver becomes a cheerleader, a false witness to a process that is so obviously flawed, and so obviously painful, that the truth, the whole truth, can’t be said clearly enough. For when does one support the quest for a cure, and when does one say it is foolish? When is it honest to say what one sees and feels? And when is it simply cruel? And, really, what can anyone say about another’s desire to keep trying to live?
Relationships, real relationships, are far more nuanced than any story can tell. Real relationships involve compromises and choices and changes, some of which literally lead to life-denying patterns and pain.
Ultimately, it doesn’t matter. He dies 32 days after the transplant and he is gone. Does our change in relationship mean I don’t grieve deeply and truly, that I don’t suffer in my heart and soul? For surely, I do. I have lost my best friend and I miss him with an intensity that surprises, scares, and humbles me.
A few weeks ago, I found a letter that Michael never sent to me. It was roughly written in one of his many notebooks while he was still in the hospital, and it was dated two weeks before he died. He’d had a particularly awful day and in it, he said he realized that he was dying and he had accepted it. He felt he still had a fair amount of time to live but he was philosophically open. He was in and out of deep and frequent meditations at that point and he knew he was going to a place without a body, a place without the pain of earthly existence.
He apologized for putting me through all that he had put me through, and he wished for me to find my freedom and my peace. The letter ends with this: “Wherever I am, whatever I am, know that I hold you close in my love and consciousness for all eternity. (Imagine the hubris of that statement!). But if it can be stated in truth, I’m saying it with all my being.” These are the last words he ever wrote and they always make me cry.
We came together as soul mates, and he died as my soul’s companion. My mind flashes on our last moments together every single day. He died with our last words being words of love, words gasped out in the final terrifying minutes of his life. I’m so glad for this, so filled by it. I believe he had a beautiful death.
Clearly, our souls were meant to be together, to accomplish certain things together, to love and learn together. But our mission is over now. Knowing the depth of Michael’s soul, the depth of his spiritual practice, I can only assume that he accomplished what he was meant to accomplish. I can only assume that he was done with this life.
So now I can tell the truth. The truth of his illness and his impotence and how it confined our relationship, the truth of my reluctance to fully commit to seven more years of our half-life together, the truth of his fears and his final acceptance of death. And ultimately, the truth that love takes many forms. For we loved each other, through all the missteps and sorrows and joys, and in the end, it is all that matters.