Journey to End-of-Life
Blue shaded box, small image of Arielle Dance- black woman with glasses smiling. Text beneath reads, "No one should leave this realm wondering if they were loved, appreciated, or if they mattered." Arielle Dance, Journey to end of life. Ability Magazine and Diversability logos.
By Arielle Dance, Content Writer at Diversability®
There is something sacred and beautiful about saying farewell to a loved one before they depart.
A couple years ago, my mentor notified her circle that she was diagnosed with a terminal illness and would begin her hospice journey. She was seemingly so at peace with her decision. Throughout her ten-month end-of-life journey, she and her family sent a group of loved ones regular emails with updates on her emotional well-being, recordings of her sharing stories, and requests to share music with her to a playlist. She prepared us and comforted us for her departure.
I wrote to her often and hoped that I expressed a decade’s worth of appreciation and gratitude in every note. She would respond with updates of how much longer she felt she had left on this earth and how the weather was. She would reassure me that she was comfortable and prepared for death, whenever it came. In every interaction she was preparing me for life without her.
I recognize that death can be just as spiritual, full of compassion, and joyful — as it is equally sorrowful, uncomfortable, and grotesque.
I have experienced sudden loss. Where cherished ones were snatched from this realm unexpectedly and painfully — leaving behind children, spouses, and loved ones. I have come to believe that the alternative experience of journeying through the end-of-life path slowly and carefully makes the experience more tangible and beautiful. I have more respect for the beauty of death now. I recognize that death can be just as spiritual, full of compassion, and joyful — as it is equally sorrowful, uncomfortable, and grotesque.
To view death in a new way, a reflective and beautiful way, is a learned experience. It comes from journeying with a loved one in those last moments.
I reflect on the final days with my grandfather in hospice. He lay in silence, surrounded by family. I had studied just enough about end-of-life to consider that we should put on some jazz music for the former horn player. When I was alone with him in the room, I laid hands on his chest, practicing reiki on the areas where tumors were visible on the surface. I prayed over him for ease and peace. When he left this world, I do not remember crying a lot at first. Because, as with my mentor, I was prepared for his death. I believe that his death brought him relief from physical pain.
Moving through my life as a disabled person, I have been faced with the questions about what end-of-life will look like for me. When I’m admitted into hospitals they ask about my living will and wishes. The first time these were requested, I was in my early twenties and was terrified. After several traumatic health experiences, I have put pen to paper and know that mapping out my last wishes is helpful to my loved ones as well. I charge you, readers, to consider how your death will be carried out. If you’re able, will you hold your loved ones’ hands through the final stage or leave them clueless to make all the plans themselves? Do you want your remains to be donated for medical research after you pass away– to help find a cure for your medical condition?
From my experience, the preparation of journeying with a loved one through the final stages of life, helps with grief. It does not change how I grieve. Death is inevitable but that does not numb our feelings towards it. Whether we are preparing for our own fate or that of a loved one, there is a reckoning we must come to terms with. How will we live out our final moments — even if we do not know they are our last?
No one should leave this realm wondering if they were loved, appreciated, or if they mattered.
I recognize that we are not always granted opportunities to say goodbye, but if you are allowed the chance, take advantage of the moments. Exchange letters with a loved one who is sick, take moments to listen to them share oral history, and certainly shower them with adoration. No one should leave this realm wondering if they were loved, appreciated, or if they mattered. Everyone deserves to know how they impacted the lives of those around them.
It is my belief that we should not wait until someone is terminal to share how much we appreciate them. After the loss of my mentor, I wrote a letter to all of my mentors and admired professors. In the email I shared the story of my mentor who recently passed along with all the reasons these chosen few mean so much to me. I vowed to shower them with gratitude while they are still with me. There is no promise that I will have the same prolonged opportunity to journey through the experience of end-of-life again. Next time, it could be sudden. Next time, it could be me.
. . .
This OpEd was originally published in ABILITY Magazine June 2022.
. . .
About the author:
Arielle Dance, is a Writer at Diversability who identifies as a black queer woman with disabilities. A PhD in Mind-Body Medicine, Arielle is published across multiple online platforms and has a children’s book, Dearest One, that focuses on mindfulness and grief.