My mom passed away July 7, 2014. She died with dignity, on her own terms in my father’s arms. I really don’t know how she did it. She dug her willpower in and ended her own life the only legal way a person can in New York State. She stopped eating and drinking. It took 13 days from start to finish. Faster than anyone anticipated.
You see, 3 years prior, mom found out that she had ALS. It was devastating. This strong, health conscious woman was clobbered with the cold hard truth of her diagnosis. A chronic debilitating disease that was going to shut down her muscle control of various parts of her body eventually fading away her ability to swallow or breathe causing her to drown in her own mucus. Mom was not going to have any of that! She set her mind to controlling her own end and not letting this terrible diagnosis have its way.
She and Dad got right to work. They quickly sold their 3 story large home and downsized into a low maintenance condo. They had weird uncomfortable evenings where they invited all of the immediate family over to take turns choosing items off of fold-out tables from that week’s cleaning, packing and clearing.
At first it was really awkward, how boldly and without emotions they were purging their life’s belongings. Such benign items as a second strange coffee grinder that had been on a shelf for years to a huge pile of hangers, a nose hair trimmer to boxes of wrapping paper and various other oddities that I had never seen before.
Once they were settled into their new condo they traveled to the rest of the places mom wanted to go on the planet. She sure did know how blessed she was to have been able to travel so much in her lifetime. She talked about how lucky she felt to have been born into such a life. For her, she truly felt she had lived a full one, jam packed with great relationships and experiences.
In her final year she and Dad let their family, friends and church members know what her plan was. She decided and announced in December of 2013 that the upcoming June was when she was going to put her plan of death into motion. I remember lying awake night after night in my bed plotting how mom can kill herself faster. I researched ways to commit suicide, legal death, what states and countries allow assisted suicide and how she could do it without any legal ramifications. I called mom one morning after a particularly awful insomniatic-night crying. I wailed, “I’m lying awake at night thinking about ways to kill my mother!” and she laughed…yes, laughed. Then told me to stop. Told me that she was not leaving Rochester, that she was not going to break the law and that she knew what she had to do. She was not afraid and she would not change her mind.
As the date drew closer letters from friends, family and the community began to pour in. Mom read each and every one of them out loud to us. She felt so very loved. She would say that these were the letters that people would have sent to all of us after her death if she had died suddenly and she would have never gotten a chance to read them all. It was the start of what I consider a myriad of gifts that came out of her decision.
As the date got closer she stopped seeing most people. She did not want to talk about world issues or politics anymore. She finished writing letters to all of her close family and friends, she finished a few quilts for possible great grandbabies that might come along. She gifted away every piece or her jewelry, artwork and collections. Keepsakes from my brother and my childhood that only a mother would keep we each received in large manila envelopes. Inside was my first grade report card, weird art items I had made, a girl scout badge or two, neat odds and ends that only a mom would keep. She also handed me another manila envelope. In that one were all the things her mom had saved from her childhood. Her childhood art and report cards, school papers and more were inside. I knew that mom knew what it felt like to receive this envelope from her mom before her mom’s death and somehow it struck me harder than I could ever explain. The weight of those envelopes in my shaking hands I will not forget, nor minimize. When I pass them to my own daughter and son, along with the envelopes of their childhood trinkets and papers I have saved, I will know what they will feel in that moment, the weight of it all.
In the final weeks we dined together on all of her most favorite foods. She ate butter and deserts, she laughed until she cried. She smelled flowers with such deep breaths. Still, even as I type this, I can see and hear her leaning in to take a huge full sniff of a magnificent bloom. This memory I love so much.
When it was time, her time, the moment she decided it was to begin, it did. She just stopped eating and drinking. My father, brother and I all fasted with her for the first 24 hours out of solidarity. As we began to eat again, she did not. I avoided mentioning food to her and if she would ask what I had for breakfast or dinner I would lower my voice and crinkle my lip and say, “oh nothing much… it wasn’t that good anyway.” She stopped me from doing that quickly. She wanted to hear all the delicious details of food. She said it helped her. She meditated and talked about things she was grateful for. She kept a small stack of those wonderful loving letters from various people in her life right by her side and would read a few different ones each day.
When it was over and she was gone, we went to the funeral she had planned. There was not much to do besides support Dad and each other. Mom had done it all already. She had made her death easy on us as best she could. Some people were uncomfortable with her choice to end her life and I understand that. I admit that I too am uncomfortable even still with it. She died with grace and dignity. She died on her terms feeling loved and grateful. I am so proud of her and often wonder if I would have such class and strength if facing the same situation. Mom taught me how to live and how to die.
I still sometimes think that she would still be here with us if she had let the disease take its natural course. Yes, most likely she would be bed ridden, incontinent, unable possibly to speak or feed herself, but she would be here with us, holding her great grandson. Quickly I stop myself thinking that way and ponder what a selfish though it is for me to have; to wish her here beyond her line of dignity and independence. I have had to learn that my wants do not trump the wants of others. I’ve learned that my line of tolerance will never be the same as another’s. I’ve learned that even if I do not agree with another’s decision, I can still support them with every fiber of my being with limitless acceptance.
I remember her need to have quality not quantity of life. How she felt she had done everything she ever wanted except growing older. When her smile and her laugh float back into my mind’s eye I am comforted by the pride I have to be blessed with the gift of her life, her choices, strength and determination. I am humbled and honored to have witnessed my mother die with dignity and I am so very proud of her. Mom was always protesting one thing or another in her life. We walked together in the Million Mom March in Washington, DC. Mom pushed for women’s issues until her final year. Mom knew that staying silent helps no one. Mom taught me that it’s ok to disagree as long as we are all still talking about issues. It’s ok to talk about doctor assisted suicide. It’s important to talk about. It’s important to implement change so that it becomes easier for families and loved ones to go through this experience.