83: One in a Million

83: One in a Million

From Chicken Soup for the Soul: Family Caregivers

One in a Million

Sometimes even to live is an act of courage.

~Lucius Annaeus Seneca, Letters to Lucilius

“What’s harder, being the caregiver or being the patient?” I asked. My husband, Michael, and I stated in emphatic unison: “The caregiver.” We both had the “opportunity” to occupy the roles of patient and care-giver. We understood, implicitly, the impact—physically and emotionally—of caregiving.

We lay on the bed holding hands. He shivered under the covers. I was on top of them, warm enough to break a sweat. I watched the shadows race each other across the ceiling as early evening began to settle in.

I leaned over and kissed my husband’s clammy forehead. As I did so, I caught a chill. It had nothing to do with the ambient temperature. It was a warm, beautiful early evening in late spring. But the frigid fingers of knowledge running up and down my spine caused me to shiver. Knowing that the man I married—the man who fathered my children and lit up my world—was rapidly losing his battle with cancer literally left me cold.

“Do you want me to bring your meds to you, or do you want to try to join us at the dinner table?” I already knew his answer to my question. There was no possible way for Michael to get out of bed, but I wanted him to know that no matter the circumstances, he was still part of our family.

Michael was diagnosed with a cancer of the adrenal gland. A slow-moving deadly cancer, it comes with no symptoms until the end stage… stage IV. “Stage IV adrenal cortical carcinoma.” The oncologist rolled the words off his tongue as smoothly as a marble rolls off satin. It took me six months to be able to say the name, and I usually choked on each word.

Michael was doomed the moment the diagnosis was made, and because of this cancer’s rarity, he was “one in a million.” There was no known cure.

My own diagnosis came two years before Michael’s. The name was easier to say, but just as likely to stick in the throat. Strep A necrotizing fasciitis, more commonly known as “the flesh-eating bacteria,” had waged microscopic war on my body. I fought hard and eventually won, but my legs below the knees, my right hand, and the left side of my chest were collateral damage. I ended up with a new identity in my victory—“triple amputee.” But I held onto my life.

From the beginning of my illness, Michael was with me fighting as hard as I was to keep me alive. And it was he, my loving, devoted husband, who had to make the heart-wrenching decision to keep me alive by sacrificing my limbs. He was at the hospital every day and night. He kept me company, made me laugh, and dried my tears. He became my courage, my cheerleader, my caregiver. Now, it was my turn to fill that role.

I placed my fake feet on the floor and rose from our bed. I walked to the threshold of my bedroom door, when I heard his words, raspy and weak, in the immortal wisdom of Jed Clampett of The Beverly Hillbillies fame, “Y’all come back now, y’ hear?” Chuckling, I turned and looked at my husband. He looked small and wasted; his skin, once a beautiful dark olive color, was now waxy and pale. His hair had taken a beating from the brutal chemotherapy. The dark, thick curls that had adorned his head for 44 years had been replaced by white baby-fine wisps. Only his beautiful crystal blue eyes remained unscathed by the ruthless, heartless hands of cancer. I gave him my assurance that I would return after our two little boys were tucked securely in their beds, and then I turned quickly so he wouldn’t see my tears.

It was excruciating to witness Michael’s swift decline, and I knew that it wouldn’t be long before he was no longer with us. But as his caregiver now, I wanted to give back to him what he had given to me. I emulated his behavior, trying in desperation to walk in his caregiver shoes and keep my tears at bay. Like me, he did not need to see the profound sadness in those we depended on to be our courage.

And it was courage that kept me balanced, courage that moved me forward. There were days when I felt as if I had one foot in the world of the living and the other on the grave—and this day was one of them. I knew I could lose my balance and fall at any moment. But the three people I loved most in the world were depending on me to stay on my feet. Falling simply wasn’t an option.

I reached the kitchen to a chorus of “Mommy, can you do this?” and “Mommy, can you do that?” I smiled at my two precious children. They were so innocent and unknowing of what was to come. It wouldn’t be long before I would have to pick up the pieces of two little, broken hearts. So I reveled now in their everyday little-boy antics. Even in my desolate sadness, looking at my two little boys, I could not help but feel blessed.

Michael and I utilized every moment of the time we had left together to talk about our children… about us. I promised not to allow my disabilities to interfere with our children’s growth and self-esteem. He wanted them to know above all else that he loved them, that he didn’t want to leave them. I held him in my arms and dried his tears, as he had done for me.

We reminisced, we laughed, and he took me places with his words and touch that I had never been before. We spoke our language of love and truth and passion to each other. Our souls were intertwined, becoming one in total honesty. It was beautiful, and lovely, and amazingly freeing. I got to know and understand my husband on a deeper level, a soulful level, and that was truly the gem unmasked in the last moments of his life. It was the last and most profound gift he ever gave to me.

I have come to realize that the hardest thing about being the caregiver is being the one who has to live through the dying, being the one who prays the caregiver’s prayer… “end the suffering.” But even with all of the physical and emotional exhaustion and heart-ache that comes with taking care of someone who is desperately ill or dying, I have also come to realize that the gifts received through this process are overwhelming, plentiful, and permanent.

Over time, my grief has dissipated, and I have kept my promises to Michael. I remain astonished by how I survived such profound and enduring losses. But I know, without hesitation, that I would do it again. It is easier being the patient than the caregiver; Michael and I were correct. But being the caregiver is invaluable, life-altering, and transcending. It is one of the most amazing gifts of all.

~Cindy Charlton

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