Just because my death is imminent does not mean that I should suddenly lose my ability to make my own medical decisions.
It's traumatic on so many levels to watch a loved one die. However, realizing that is likely how you will also die is chilling. An inescapable sense of dread creeps into your entire being when you see a version of yourself die.
I watched my mother ... my uncle ... and my grandmother ... all perish due to aspiration pneumonia due to the disease which plagued(s) us all: Spinocerebellar Ataxia 2. Our condition is hereditary, degenerative, and neurological. It is also terminal.
A recent accident, for which I was hospitalized, further added to my anxiety about my illness. Coming so close to death made me realize how much I really cherish every day and hour that I have because every moment of life is a gift from God.
Due to these circumstances, I have begun to consider — and become a proponent of — medical aid-in-dying for the terminally ill.
The Delaware legislature had a chance last session to pass the Ron Silverio/Heather Block Delaware End of Life Option Act. Despite advocates and medical professionals speaking out in its favor, the House removed it from consideration. I’m here to ask the legislature to put this bill up for a vote and pass it. Give Delawareans a chance to choose how they end their lives if they are terminally ill.
Let me make one thing clear: I don't want to die. I want to live. I want to feel the sunshine on my face and hear the wind whisper to the trees. I enjoy watching the children play at the park. I enjoy watching others live their lives.
They don't even know how good they have it.
I work hard to maintain my composure during conversations with people — as they excitedly look to the future — all I can do is try not to scream. My husband talks excitedly about what we will do after he retires. I smile and nod. Yet, I know that by the time we can enjoy our golden years, I will most likely be bedridden or have passed.
It is improbable that a cure will be discovered for my disease before I die; I am already experiencing advanced brain cell death. I’ve accepted that I may never be an old woman.
One day, a friend mentioned end-of-life options.
They explained that it has been refined with safeguards to make harm to someone against their will unlikely. Significant and robust protections are in place to prevent abuse.
For example, in addition to a medical diagnosis of six months or less to live, the terminally ill patient's medical team must inform the adult requesting medical aid in dying about all other end-of-life care options. The adult requesting medical assistance in dying can change their mind anytime.
Medical aid in dying is thought about frequently but rarely used. In Oregon, it accounts for only about one in 300 deaths despite its legality. One-third of patients who obtain the medications do not take them, but such dying patients are comforted knowing that this option is available. Until now, I had not considered this an option despite accepting my impending doom.
Accepting early death was so stealthy that I didn't even notice at first. I had begun to trip over everything and become very clumsy overall. I have broken bones by taking a step, by doing something I have done thousands of times a day since I can remember. I kept dropping things. What was going on?
Finally, I realized something was definitely up. The doctor diagnosed me with a disabling illness, but the words seemed like they couldn't be real. What does a terminal disease mean to someone in their twenties?
Now, I'm at the point where I can still walk … poorly. Imagine a very drunk toddler. I can't carry anything. I go shopping using an electric wheelchair, but when I get home, the groceries live in the car until I can find help. I am disabled.
I have learned that disabled opponents of these laws — though not the majority — are the loudest voices in the room. They make it seem like there's overwhelming opposition to medical aid in dying legislation.
The truth is polling shows strong support for medical aid in dying among the disabled community. Polling shows that support spans the entire spectrum — including 65 percent of those in the disability community. And by a two-to-one margin, Delaware residents feel that allowing doctors to legally prescribe lethal drugs to help terminally ill patients end their own lives should be an end-of-life option.
While I often feel alone in my support, this shows I'm not.
During my recent stay, several people in the hospital were also terminally ill. According to the criteria, I would not qualify for medical aid in dying, but they did. They shared with me that they wished they least had the option for MAID.
Everyone deserves bodily autonomy. Just because my death is imminent does not mean that I should suddenly lose my ability to make my own medical decisions. There is nothing wrong with my mental faculties.
Truthfully, I cannot imagine taking medicine and never seeing my husband and children again. However, I do not know how I will feel in my final moments. It gives me great ease knowing that this may be an option I can use if my suffering becomes too great.