I recently wrote a short, short story and I decided to share it with my blog readers. Please let me know what you think of it, especially if you have a loved one with Alzheimer’s or dementia.
In the last moment before she lost consciousness, Betty wondered who she would be when she awoke. She and her husband Mark had discussed this many times before agreeing to the experimental procedure that, if all went well, would save her from the ravages of Alzheimer’s Disease. They had carefully assessed their options, examining each projection of their future life together in minute detail, as if they could take their love, their desires, their children’s reactions and examine each under the lens of a microscope – reducing the incredible complexity of human life to a collection of cells pulsing and vibrating against each other. They had convinced themselves because they felt, in the end, they had no other choice. They believed they could bring order and predictability to the rest of their life together, if only they could save Betty’s brain from the rapid and inevitable deterioration of early-onset Alzheimer’s.
Betty agreed to be the first person to have neural stem cells of another human transplanted into her own brain only after her daughter and son-in-law agreed to donate stem cells from their newborn son. Knowing that she would be transplanted with cells that would bear some of her own genetic material was comforting to her. Knowing that the cells were from a newborn was encouraging to her. But not knowing if these cells would change her from who she had been to some new version of herself was frightening. Yet, in the final analysis, both Betty and Mark had concluded that it was not as frightening as the new version of herself that Alzheimer’s promised.
As the surgical nurse inserted Betty’s IV line, Mark gently kissed her forehead. He said, “I love you, Betty … I will always love you … no matter what,” and he meant what he said. But they both knew she would be easier to love if she was still Betty, the Betty he had lived with and loved for 26 years. This had been the deciding factor for them – betting on the fact that Alzheimer’s would take away more of the Betty he loved than having another person’s stem cells in her brain would. It was a risk and they both knew it. The night before, while making love, Mark had vowed to stick by her no matter what the outcome.
Three months earlier, sitting in the researcher’s office, Betty and Mark and their daughter, Karen, listened to two scientists and one surgeon explain the procedure. Betty sat in a straight-backed armless chair. She clutched the worn leather strap of her pocket book and unconsciously tapped her right foot against the leg of the chair while the surgeon gently touched her head, outlining the incision he would make. He pointed to an area behind her ear, calling it “the point of entry” as he detailed the process of inserting healthy newborn stem cells into her ravaged brain.
Karen sat on a small faded blue couch looking nervous and instinctively rubbing her large belly as if to protect the growing life inside her. She looked from her parents to the doctor to the door. When the surgeon asked if she had any concerns, all she could say was, “If you can promise me it won’t hurt my baby, I will do anything to save my mother.”
Mark, sitting beside Karen, also asked for reassurance that his unborn grandchild would not be hurt in any way. Both researchers and the surgeon assured him that there was no risk to the baby. Feeling only slightly relieved, he asked the question that had been plaguing him. He wanted to know if infant stem cells had personality traits. Was there a chance that implanting neural stem cells from another person would drastically change his wife’s personality? The question scared him so much that he had refrained from asking it until now.
Karen looked at Betty to see her reaction, but Betty’s face was passive. She was, as her family described it, “in a state.” Although she had been fully engaged in the conversation just a few moments before, Betty’s mind had now drifted to a place known only to herself. She stared blankly ahead, slack-jawed and unaware of her surroundings. Her hands, no longer tightly gripping her handbag, rested on her knees. She didn’t look worried, nor happy, nor sad. She appeared emotionless. Karen averted her gaze. It broke her heart to see her mother this way.
At the hospital on the day of her surgery, Betty didn’t remember this visit to the doctor. She didn’t really remember the many long conversations during which she and Mark agonized over whether or not to volunteer for this experimental cure. But she remembered Mark and Karen and her two sons. She still loved each of them fiercely even though sometimes when they were all together she felt bewildered by the talking and laughing, and the crying too.
Betty’s loss of memory had been getting worse each day. As her neurologist had predicted, early-onset Alzheimer’s progressed rapidly. Yet there were days when her mind seemed clear and sharp – days when her sense of humor was quick and her comments witty. These good days made the bad days harder for her family. They wanted to understand what was really happening inside her brain. Why could she think clearly one day and forget how to put her shoes on the next day?
Mark had once heard Alzheimer’s described as a “long goodbye.” It seemed so terribly accurate to him as he witnessed his wife losing pieces of herself, bit by bit, day by day. He was shocked to realize that with every bit of her that disappeared, she took a little piece of him too. The shared memories, the knowing looks that once conveyed meaning without the need of words, the simple understanding of who he was because of who they were together – he was losing all of this, just as Betty was losing herself. Because of this the choice was easier. They would take this chance because they had each already lost so much of themselves to the war in Betty’s brain.
Mark pictured Betty’s brain as a battlefield where healthy neurons were waging a valiant battle against the foot soldiers of Alzheimer’s – amyloid plaque and tangles of tau protein gone cruelly awry. He saw healthy neurons stretching and straining to connect with each other, fighting their way through the jungle of tangles and plaques that prevented their synapses from making contact.
He imagined the healthy neurons loaded down with heavy knapsacks carrying the precious information needed to survive. In his mind, the healthy neurons looked like starving children he saw on TV commercials – emaciated, hands outstretched in supplication, begging for information that would nourish them. He wanted these healthy neurons to win more than he had ever wanted anyone to win anything. He believed his survival depended on it.
Those neurons made it possible for the rest of Betty’s brain to love him. He hoped that their grandson’s stem cells could save those neurons; that they could supply ammunition needed to win the war that was being waged against Betty’s will inside her brain. A war that had started without provocation; without a declaration of war, with just the slightest hint that something was amiss when Betty couldn’t remember how to bid her hand in bridge. They had both laughed it off – calling it a senior moment, even though Betty was only 49.
Betty lay on the operating table, surrounded by nurses, neurosurgeons, and anesthesiologists. An audience watched from the viewing chamber above the operating room. Although they could see inside her brain, none of them could see her mind. What was it experiencing as thousands of healthy stem cells were implanted in her brain? Would Betty ever be able to recount it to them? When she came to, would it be obvious that the experiment had worked? Would lost memories be restored? Could she begin to accumulate new ones?
Betty felt as if she was emerging from a warm liquid. She longed to be held. She wanted to suckle at her mother’s breast. She wanted to be enveloped in loving arms. But first she had to keep going into this scary place. She crawled slowly through a thorny path, struggling to get through the tangle of briars and clumps of rust-colored mud. The further she went, the easier it got. She felt stronger as she made her way to a distant clearing. She felt alive in a way she could not describe. There was something waiting in the sunlight. As she got closer, she recognized it. It was her past. She embraced it lovingly and then continued on to the glowing, pulsing path waiting just beyond. When she reached the path, she stood up and took her first step. She knew just where she was going. The path led to the rest of her life and she couldn’t wait to get there.