Accepting a difficult gift in the face of overwhelming loss

While mortality is the gift we are given at birth, its evolution within a world prescribed by illnesses, chronic and incurable, seems so unnatural, so at odds with the “natural causes” we hope might define our decline.

Ambiguous grief is often given as a name for those experiencing this reality. Profound, paradoxical and open-ended, such grief is born of impossible contradictions.

The chronically ill person is loved and present, but not entirely the person one has known. Parts are missing. Losses exist in relation to identity, ability, independence and relationship.

Estrangement from the life lived prior to diagnosis advances in relation to the series of unwanted transformations chronic illness authorizes.

Those of us who witness these levels of complexity and uncertainty know the person will not recover, that the end will come, an ending dreaded, impossible to reckon with, but known to be inevitable.

I had lived the complexity of this kind of grief during my husband Mendel’s more than 20-year battle with kidney disease. I tried to figure out how I could accept fluctuating, heartbreaking changes in personality, possibility and potential.

That grief and my figuring were nowhere more poignant and unrelenting than when he was in hospital fighting to salvage a second kidney transplant.

His devoted doctors felt this second transplant was an almost perfect match, another chance at life without the dialysis, though dialysis had been a miracle following the failure of the first transplant, a testimony to the expertise, ingenuity and determination of a host of nephrologists, dialysis nurses and Mendel himself.

But at 66, he knew he was, as he put it, circling the drain. He had confronted and adapted to the crippling effects of his illness. He endured intractable pain, but defined his life both in relation to the illness and also apart from it, finding in himself the strength and courage to go on.

I sat with Mendel in a claustrophobic and curtained cubicle, worn with waiting for the second transplant miracle to take hold. I became increasingly aware that it would not. Other transplant patients recovered and departed. Our limbo state persisted as an impossible contradiction: I hoped and yet suspected our case was hopeless.

Over the years, I had grown to understand that organ donation could be a double-edged sword. On one hand, the “successful” transplant gives the patient this extraordinary chance through a gift, often given in sorrowful circumstances by a deceased donor’s family.

On the other, the recipient lives in fear that the transplant will fail and endures the debilitating side effects of anti-rejection drugs, the juggling of interventions and alternate treatments seeking to provide an enhanced quality of life — even if that quality is consistently and irrevocably diminished over time.

One afternoon, an attending nurse checked Mendel’s sleeping form. He had been deteriorating for weeks. She turned to me. Whispered: “Don’t let him die here. Take him home.”

This nurse gave voice to what I knew to be true. Perhaps Mendel knew it to be true as well, though he was determined to fight on. I supported that willingness.

The nurse’s words, however, were an extraordinary gift. They were an affirmation of an ending Mendel’s remarkable transplant team had done everything to avert, an affirmation of an ending Mendel could not bear to confront, but an affirmation of my grasp of what we were living — and dying — through.

This nurse’s understanding acknowledged our dignity in the face of an experience overwhelming and fraught. That is how I felt her words.

While I never told Mendel what the nurse said, he began to advocate for his release on his own.

At home, he continued to give the transplant every chance he could, but the ending came with test results revealing rejection, a dialysis treatment aborted because he suffered a heart attack, a mad dash to the ICU only to discover he did not qualify for that space because he was in fact dying, and finally, an intervention by palliative care that found another hospital room to take him.

He died the next morning.

So many of us have these stories we have lived with, are living with now. What courage is required to see them through and then, in the afterwards for the ones left behind, to manage the enduring struggle — reinventing identity, location, purpose and community.

I am many years into that stage now. In the midst of losing and loss, and new growth, I think of the nurse who whispered to me, the one kind enough, compassionate enough to see us as we truly were in that moment, in that cubicle — to see me and know she could gift a most unwanted and difficult truth.

Unbearable, yes, but her gift tended to Mendel’s mortality, supported our dignity in the face of loss and expanded forever my understanding of what another kind of gift might be.

arts@freepress.mb.ca