As a chronically ill person I’ve always wondered if, when my journey is over, I will go with dignity. But, what does that mean? The truth is my definition of a dignified life and death has shifted over the years, morphing like my condition of my body due to my condition. It’s also been altered by my acceptance of my limitations, development of deeper relationships and expansion of my “to do list,” which some might call a “bucket list.”
I began pondering the delicate mortality dance shortly after college while finding myself under attack by a mysterious illness that was sapping my physical strength, my bank account, as well as challenged my emotional well-being. Just as I felt lost, I went to the Wang Theater in Boston in the early 1990’s and saw the musical “Rent.” In it, there are songs that both asked and answered the questions swirling in my mind. Among them is “Will I?” I’ve been haunted by these lines, belted out by a group of terminally ill people in at a group meeting in the shows, since I heard them: “Will I lose my dignity? Will someone care? Will I wake tomorrow from this nightmare?”
At the time, I hoped for a magical cure that would take away my pain and suffering; alter my genetic makeup so I’d be health instead of a sick person living for healthy days. But, I didn’t wake up from my nightmare, at least not the way I thought. Instead, I adjusted to my circumstances, outgrowing my previous definition of a nightmare and creating a new reality; one that allowed me to love, my career, and other passions in my life without allowing my illness to derail me. Of course, I was delayed at points by continuing bouts with pain, nausea, fatigue, surgeries, biopsies, exams, blood tests and a host of other medical invasions. Honestly, it was only during the times when I was subjected to various hospital and doctor office encounters that I continued to explore the notion of living with dignity.
What I learned is that there is no dignity in being forced to get naked in front of strangers, allow them to peer into every orifice without even telling you their name, or inserting devices, machines, or anything else in your body without an explanation. Then, there’s the humiliation of a constant parade of people into my hospital room, exam or radiology space to see parts of me some people I dated haven’t seen. Additionally, there’s the horror of struggling to go to work every day only to be pushed to the verge of bankruptcy by outrageous medical bills either denied by insurance companies that deem them unnecessary, experimental or outside of the fee structure. Let’s also not forget the conversations among doctors in your presence without addressing you, as if you are too stupid to understand what’s going on with your own body. Finally, there is the disrespectful way doctors, nurses or other medical physicians bark out orders for treatment or hand out prescriptions without any explanation.
Despite all this is willed myself not to give up or give in; to conduct myself by my personal definition of dignity henceforth. What does that mean to me? It’s about conducting myself in a manner that projects my true nature so people know and care about who I really am, what they mean to me by striving to demonstrate honesty, compassion, contrition, assistance, humility, pride, and faith. I suppose I believe by doing so I will create memories that make me unforgettable and rendering me immortal.
I must concede, other than a few isolated times in my life, I haven’t spent an excessive amount of time focused on my inevitable death. When I did, I felt it was my obligation to pass in a dignified way by ensuring my financial burdens don’t fall on my family, that I am clear about what measures I’d like to have taken to save my life and to make sure someone can immediately take control of my assets should I become incapacitated. So, I called a lawyer and drafted a will, power of attorney and living will.
I know I’ve tackled how to live with dignity head on. Recently, I wondered if I have done enough to prepare for the end. Like the rest of America I’ve been transfixed by Brittany Maynard’s story. She’s reignited the debate about the right to choose how we all leave this Earth. While, I’ve considered suicide, since assisted suicide is not allowed in New York or New Jersey, as far as I know, I’ve listened to the pleas of my friends and family not to surrender and allow nature to take its course. So, that’s what I’ve resolved to do at this point. But, I am thinking about what dying with dignity means to me. Right now, it’s living until the best I can with the body and mind I’ve been given. After all, my grandma always used to say “from the moment we all take our first breath we’re dying. The truth of the journey is deciding how you want it to end.” I try to write and rewrite my conclusion every day, adjusting my actions and needs to ensure as peaceful a transition as possible.
About the Author:
Nika C. Beamon is the author of the medical memoir, Misdiagnosed: The Search for Dr. House. In 2009, her non-fiction book, I Didn’t Work This Hard Just to Get Married: Successful, Single Black Women Speak Out (Chicago Review Press) was released. She’s also the author to two mystery novels.