Mae raised her eyes. As she met the gaze of the woman in the room across from her, Mae saw ripples of emotions pass over the woman’s face before she nodded her head. Mae walked towards the woman and handed her a framed picture a family. Mae did not think hers should be the last face that this woman saw.
Mae stepped outside. The day was clear, the sun shining so bright and warm it instantly warmed your spirit. She looked back to ensure the door was closed, headed down the porch steps and started walking briskly away from the house. The neighborhood in which she was walking was nice. Large Tudor style houses, window boxes filled with bright flowers in front of gleaming windows, established oaks trees shading the yards. She thought about this neighborhood and the people who lived here. She did not know them, oblivious to if they were happy or not, how they felt inside their nice homes. She wondered what unpleasantness they were shielded from by these lovely exteriors. Mae relaxed as she put distance between her and the house. Mae had no qualms about what she did. She was, however, keen on avoiding jail.
May dreamed about a lion. As she began her hygiene routine for work, she thought about what she had read about lions on the dream interpretation website before getting out of bed. “To see a lion can indicate characteristics about you such as loyalty, dignity, respect, and domination over the people around you.” Huh. Mae did put some merit into dream interpretation. She figured that if she remembered a dream, she should try to figure out what going on deep in her subconscious. Dignity…..dignity hit a nerve.
Mae mused over dignity. As she left her home and headed to work, she thought a lot about what that word implied. Bearing, conduct, came to mind. So did self-respect, decency, honor, and quality. When Mae was in middle school, her maternal Grandma moved in with Mae’s family after a cancer diagnosis. It was her fourth diagnosis, and due to several factors, she decided not to pursue treatments. Mae watched her Grandma deteriorate. Slowly, at first. Little stumbles here and there, forgetfulness, she started wearing adult diapers, then sitting on a chair in the shower and while on the toilet. And then it escalated. She would scream in the night, howling agonizing screams. Wails that conveyed pain that would taper to a low, howling anguish. I watched my Mother become her parents’ parent. It sucked. It was a dynamic that made my Mom uncomfortable and clearly demoralized my Grandmother. For months, she was stagnant. Our presence agitated her, she did not know us and Mom explained the cancer had taken her memories. Soiling herself, constant crying, unable to feed herself or get dressed. Not able to read or do any of the things that gave her joy, or life. She was not her. One day, it must have been a weekend because the entire family was home, a hospice nurse was visiting to do nurse things. Suddenly my Grandmother started screaming and there was a thud, then more screaming from both the nurse and my Grandma. My family all rushed into the room to find my Grandma on the floor, covered in shit and howling, her despondent cries vibrating off the walls. She did not recognize the nurse, or her daughter. She was demanding to know why she was half naked and she fought anyone trying to get near her. I ran to the phone to call an ambulance, screaming and hysterical myself. After Grandma was taken away by the paramedics, the nurse finally explained to us what happened. Grandma, in and out of lucidity, became combative while she was changing her adult diaper and had rocked violently away from the Nurse. The Nurse could not hold her, and she rolled off the bed. My Grandma broke her hip in the fall. She never came back. She was kept in a hospice for her safety, and ours too, I believe. Even though she had not known who any of us were for several days, at the end we were all paraded to the hospice to say goodbye. Grandma was so mentally and physically ravaged by disease and numbed “for her comfort” that she, well, she was not human anymore, much less my Grandma. I stood in her hospital room for all of two minutes, breathing in the inert air, feeling its filthy intent creep into my own body before I stormed out and down the hall. I burst out a door and, finding myself in a courtyard with a fountain and Japanese rock garden, started kicking the shit out of that rock garden, screams bellowing up from my soul. Something inside me had shifted. There was a definite crack in the veneer of the world that I was fostered to see and the world that I now knew existed. This was the first injustice that I had witnessed, and I did not know what to do with the rage and the pain. My parents burst through the door into the courtyard. I stopped screaming and kicking and looked at my Mother, right into her eyes and said, “You should have killed her months ago you selfish bitch.” They went back inside, and I sat out there by that fountain until everyone had said their “proper” farewells. The maleficence of Grandma’s cancer had infected the family. The infringement of honor almost as malignant as the cancer. And that day, kicking rocks, was when Mae knew her purpose in life was to provide dignity.
Mae was changed. Mae knew people died, but, at that point in her life, people just passed away. Grandma’s and Grandpa’s died because they were old, children died because they were sick, but they just passed away. It was peaceful. Her aunt had died in a car accident when Mae was in Kindergarten, she knew car wrecks were violent, nonetheless, she believed that people involved just…..passed away. So, when faced with death as a self-absorbed pre-tween, the reality that people do not calmly and peaceably die, that death could be torturous and long-term affair, hit her with all the emotions that a pre-pubescent teenage girl could conjure. Looking back, she doesn’t know why her first inclination had been that of a mercy killing. She has only logically assumed since then, that faced with raw emotion, at the base of her soul, that is what she inherently believed.
Mae was a planner. Her family did not have internet, and, it was 1997, internet in general wasn’t exactly breaking speed barriers. So, she turned to books. She malingered in the library, strolling the aisles looking for answers. She eventually wandered into a “career” section. Here, among titles promoting “do what you are!” “how to win friends” and “mind your business” a symbol jumped out at her. She stared at the serpents, mesmerized by the bodies intertwined around the staff. The wings perched onto the staff said to her, “hope.” The caduceus. As she started flipping through the pages, all the words that she felt her Grandma was entitled to in her final days jumped off the page at her:
Empathy Care Stable Efficient Compassion Loyal
In the book, there was the “Nightengale Pleadge.” This was a traditional oath the nurses took upon completing school. And there, “….devote myself to the welfare of those committed to my care.” If an act of welfare was not sparing anyone from the unjustified pain and disgrace her Grandma endured in the last few days and weeks of her life, then she didn’t know what was.
Mae had a path. Mae did not exactly know how to forge the path, but she knew that ending suffering would be the end goal. At the tender age of 12, she had steadfastly determined the course of her life. Having access to limited resources, Mae studied as much as she could about nursing, anatomy, science. But found herself still without her ultimate target. The best she could come up with was being a Hospice nurse, like the one who visited her Grandma, but she felt it lacked in the benevolence she felt compelled to provide. Then, one day in the true crime section, “Dr. Death: Dr. Jack Kevorkian's Rx: Death” She reached for the book with such resolve, you would have thought it was the last cabbage patch doll left on black Friday. As she read through the book, she felt lightheaded, a roar starting in between her ears and exploding within her existence. “My aim in helping the patient was not to cause death. My aim was to end suffering. It's got to be decriminalized. - Jack Kevorkian.” This man, this Doctor, he believed what she believed. And he was going to jail for it. That was troublesome. But she now knew that there were others out there who shared her convictions.
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Mae went back to the books. Turns out, once she knew what she was looking for, voluntary euthanasia, she was able to find a lot of material. She read “Death of a man,” she learned about the brain death theory, she pored over the stories of the Dusen’s, Karen Ann Quinlan, she tore through “Let Me Die Before I Wake” and “Darkness at Noon.” She studied the laws (to the best of her young brain capacity) and learned that in 1997, the year her Grandma died, the state where they lived had shot down Right to Die legislation. Most importantly, she studied the morals and ethics in the practice of assisted suicide. By the time Dr. Kavorkian had made headlines again in 1999, Mae had figured a few things out. She knew that she didn’t want to take a life with her own hands. That act and that decision had to be done by the person themselves. In that respect, she had begun to understand that there were people who thought how other people died were their business. Mae was beginning to grasp a lot of other life realities as well. Like, there were people who thought they had rights to control peoples love, their access to healthcare, and a woman’s uterus. She was a teenager with little life experience, but she knew that was garbage.
Mae toiled. She volunteered at a nursing home, she attended a vocational program in high school and trained to be a CNA. She enrolled in a community college and became an EMT, mostly responding to calls only requiring pulse check, oxygen, and transport, but sometimes was the first on the scene to incidents involving severe mechanical trauma and/or death. She learned to respect death. As she worked as an EMT; she also undertook the education to obtain her LPN license. As an LPN, she found a job at a family practice. Here, she started to thrive. It was here that her heart opened to nursing, and not just dedication to proficiency. After she realized she had maxed out her potential at this level, she enrolled in a BSN program. Here, she took classes that broadened her knowledge base. Anytime she was able to choose, she presented on topics that centered on end of life and palliative care, death and dying. By this time, it was a topic that wasn’t swept under the rug and was viewed with a broader perspective than in it’s infancy, and now it had a much more appropriate names to it’s movement, including death with dignity.
Mae sought out death. There’s no other way to put it. She had learned about an organization, Onward Guides, who provided education, support, comfort, and if needed, a friend to those with terminal illnesses who choose to end life on their own terms. She became a volunteer. Clients came to the company through rigorous screening and competency checks. And, once approved, met with their assigned guides to begin the process to egress their suffering. Rules were strict. The guide, could not, in any way, help or assist the client. This was illegal. Being there was technically illegal, hence the rigorous instruction prior to guiding on your own. So, that is how Mae found herself slipping quietly out of a house, in an upscale neighborhood, providing support to a woman who had decided to end her life on her own terms.
Mae loved her Mom. Truly. Mae had been a strong-willed child and even more absolute adolescent, so those years were tough, but as Mae began to mature, she understood that everything good about her came from her Mom. Mae and her Mom had taken very different paths in their lives, and were, different in almost every belief and practice, but her core values, the kindness, the unselfishness, strength, diligent work ethic, fighting for what was right, those all came from her Mom. Now, as a woman in her thirties, Mae and her Mom were close. Mom wanted to look for a new purse and had asked Mae to join her at the shopping plaza. As Mae walked up, she intuitively knew something was wrong. Her Mom was sitting, straight backed on a bench. Her legs crossed at the ankles, she was hunched over and gripping her bag in her lap. She was looking down, closed in on herself. Mae felt in the center of her heart a quake beginning as she approached her Mom and sat down. As her Mom raised her head to look at Mae, all she could see was the terror radiating from her Mom’s eyes.
Mae’s Mom began. “Do you remember when Grandma came to live with us? How that turned into such a mess?” “Yes,” replied Mae tentatively. All her nerve endings were sparking with alertness. She felt like she was ready to flee. “Do you remember the day we went to the Hospice, and you, well, you yelled at me?” “Yes,” This had been the catalyst in Mae’s life, though her Mom did not know that. “Do you remember that I never punished you for you calling me, a …, well, you were never punished for your behavior or language.” “Yes, I never knew why, I just figured that you got distracted with the funeral and stuff. I wasn’t ever going to bring it up.” Her Mom gave a light chuckle. “Well, we never reprimanded you because you were right. Shortly after Grandma received her diagnosis, she asked me to help her end her life before she got to the point of ‘no return,’ that’s how she put it. She knew where she was heading. She said that she was old and riddled with cancer and no autopsy would ever be done. She started saving her pain meds, keeping them in a box on top her wardrobe.” Mae slowly felt her entire body drain of blood, starting from her head and working its emptiness through her body. Mae wasn’t angry, she was frozen. She knew where this was going. She just stared at her Mom, as she rung her hands and began again. “Well, when the pain started to get bad, she started to loose her abilities to take care of herself….I was sitting with her one night in her room, she was in so much pain and she had urinated on herself, she couldn’t get out of bed. She, she…..she asked me to get the pills. It was time. She asked me to give them to her and then when she was asleep, put the pillow over her face, just to make sure she didn’t wake up.” Mae’s Mom took a shaky breath and let out a nervous laugh. “I got the pills down. I got a glass of water, and I couldn’t do it. She started bellowing in disappointment. Crying. She knew instantly that I couldn’t do it. The sounds that she made, they were haunting. It was despair. I think that I drove her to madness.” Mae remembered those screams. It was like her Grandma was mourning the life she knew was lost. Mae’s Mom looked at Mae and Mae wrapped her arms around her. Her Mom knew that she did not have to Mae that she had never forgiven herself, living with this guilt, this burden, and probably, Mae thought a sense of dread that it would happen to her. Mae said, “Mom, finish what you need to say.” Mom pulled from her embrace. Straightening up she began again. “Well, we’ve all been making fun of my memory ‘lapses’ for quite awhile now.” The quake that had begun in Mae’s body started to radiate violently outward. “Alzheimer’s. Got the diagnosis a few days ago.” Mae was visibly shaking now. “Mae, I need you to help me, before, before….be stronger than……” Mae was cold. She was raging so hard she was shivering in anger. Then, something clicked. Mae came back down. Snapped into survival mode. She spoke fast. “Mom, there’s this organization that I work with. This is what they do. Now,” Digging through her purse for some business cards. “you need to start calling these numbers, you need a psychological evaluation, before it’s too late. You need to decide how you want to, um, there’s lots of ways, oh, and oh we need to outline a discovery plan….” She babbled on, focusing on the task at hand instead of the emotion. Mae’s Mom interrupted her. “Mae, what?!?! Mae, is this what you do? You kill people?!?! What is this? People do this? Mae, stop! What are you doing?!?!” Both women were near hysterical, and Mae broke. She stood abruptly, throwing her handbag on the ground, kicking it as hard as she could, so it sailed across the plaza. She clenched her fists and screamed, “Fuck! Mom! I’m trying to help you!” With that declaration, Mae fell to her knees beside her Mom, grabbed her hands, and like a child, buried her face into the side of her thigh and cried.
Mae’s universe did not collapse. After her cleansing power cry, Mae and her Mom talked. Mae told her Mom how that day at the Hospice had changed her perspective on life. She explained the Onward Guide program, she explained what she did. Mae’s Mom smiled and shook her head, “Mae. You always were so self-sufficient, and you never really aligned with tradition. And, frankly, I’m proud of you for it.” With Alzheimer’s, time was limited. Mae removed herself from her Mom’s planning stages but she did agree to be her guide when the time came, as Mae was also the designated discovery plan.
Mae smiled. She gripped her Mom on the shoulder and her Mom squeezed her hand. Mae handed her a picture of her and her sisters that Mae thought was terrible, but for some reason her Mom had kept on display over the years. Mae walked towards a chair across from her Mom and sat down. She looked at her Mom and saw her strength. She saw all the good in her. She saw she was faithful, loyal, and beautiful. She said, “I have to stay over here Mom.” Her Mom nodded and smiled. She started to look around her house, Mae not privy to the thoughts going through her head.
Mae’s instincts took over. Mae crossed the floor towards her Mom and sat down on the couch. Mae tucked her legs up and laid her head on her Mom’s lap. She clasped her hands together and put them between her knees. Mom began to play with Mae’s hair and Mae talked. Mae started to retell some of her favorite memories from childhood. Family trips to the woods, hiking, summer actives. She even confessed to her Mom some of her and her sister’s shenanigans that they thought they had gotten away with. Mae’s Mom stayed silent. Mae didn’t know how long they stayed like that. Mae just talked. Mae felt her Mom move, but Mae didn’t dare turn to look at her. She just kept chattering. At some point, Mae became aware that her Mom had left. Then Mae cried.
Mae loved her Mom.