I should be sleeping. It’s 2:33am. I have to be up in four hours.
I am in Albany as part of a campaign for New York’s Medical Aid in Dying Act. The campaign, 50 Reasons by Compassion & Choices, highlights 50 stories of real people and their reasons why they support the bill. Its genius. The people included aren’t just terminally ill patients; they are members of the clergy, doctors, caregivers, loved ones. They all have personal stories; reasons that provide their perspective.
Today is my day to share my reason.
Normally, I can do this with my eyes closed. I’ve been coming to Albany and have been involved in this advocacy for years. I’ve blogged about it in the past. My reasons then were very clear. I didn’t want my son to see me actively dying, lying in bed for who knows how long and remember me that way. I was working hard to create special memories for him. I wasn’t going to have the end of my life strip that all away. While that’s still true, he’s much older now. There is another reason that has moved to the top of my list.
(This is the most unnerving coincidence – I know God is laughing)
Exactly one year ago, I published a blog What The Fuck Is The Reason. My dear friend Melissa died the night before from metastatic breast cancer. I had sat with her family, her best friend Chrysta, and watched countless others come and go as they checked on her or said their goodbye’s. There were a few nights I stayed with her Aunt and close family friends so Melissa wasn’t alone.
Melissa lingered for nine days. There were times she was in pain but unable to communicate beyond calling out. She was visibly restless, and fluid was building up in her lungs. It was incredibly frustrating for those of us sitting there bearing witness. We were mad. We were upset. We felt helpless. I can’t fathom how Melissa felt being trapped in a body shutting down and not being able to communicate what she needed.
Death is not how it is in the movies or on TV. It’s not a natural, peaceful, falling asleep death. If you’ve never sat bedside for anyone while they died and thought that’s what it was like – you’re greatly mistaken. Cancer patients who have been on pain medications for a long time have it the worst. There is a level of tolerance that develops. A false understanding exists that with the right ”formula” of morphine, any pain can be managed. That may be true for some, but not everyone. The line between palliative coma and death is razor-thin.
Those days and nights I spent in Melissa’s hospital room gutted me; not to mention how it impacted her family, those that loved her and her sweet daughter. I don’t ever want to be trapped in my body like that. To put my loved ones through that. Those nights reinforced to me how important it is that there be Medical Aid in Dying laws in every State. Everyone with a terminal illness should have access to this option if they want it.
It’s not a religious issue – It’s a personal choice.
It’s not suicide (OMG It’s NOT) – I want to live. Cancer has other plans.
I think I always knew about the correlation in dates between yesterday/today and last year. I just never let my mind REALLY go there until it forced me. Always the middle of the night. Thanks, brain. While it will be familiar, it will also be different as I see staffers and lawmakers. The tears I know will come will be about Melissa.
I’m livin’ the dream, Melissa.
Livin it for you babe.
Two hours until I have to be up…..
Susan, this is so powerful! One of the things that traumatized me the most so much so much so that i ended up with PTSD was the way my Mom’s last days in hospice played out. I actually thought it would be like the movies with some kind of peaceful death bed scene that would wrap everything up neatly. Her death from brain cancer was horrible and deeply traumatic – nothing like the movies. It was the worst experience of my life and every word you’ve written here resonates so deeply with me.
I’m so sorry, Marie. That absolutely breaks my heart for you. No one should have to watch a loved one go through that, nor should a patient be forced to die in that manner. I wish I could hug you, but because I can’t, I will speak about your experience with your mother when I travel to Albany in April. Lawmakers in NY need to recognize that patients aren’t just speaking for themselves; we speak for everyone who has a story that could have a much different ending had there been more end of life options available.
AGAIN you got me…everything from your point of view to how it’s the middle of the night when the “brain” seems to bring clarity that one could as well deal with in the day (or, perhaps NOT and that is why the UNIVERSE takes over?). I’m sending this post to Jack’s brother (Dr. Bob) in Seattle he works with Death with Dignity there and I’d like him to read this…
Fair play to you. The Belgians definitely have it right.
It’s a bummer when you know you should be sleeping! Just promise yourself that you will have a marathon long sleep tomorrow night to make up for it. It’s like duping yourself but it helps. You can function on one terrible sleepless night. You’ve a lot on your mind!
Lots of coffee soon… 😊
You’ve hit upon my greatest fear. I recently watched as a close friend died of cancer after a initially being sent home from the hospital with 2 weeks to live, which turned into over a month of her basically starving to death. I was brutal for me when I visited and I can hardly imagine what it was like for her only child and her parents who came from out of state to stay with her until the end. She was 49 and I know damn well she would not have wanted her life to end in such a horrible way.
I have Stage IV MBC and it scares the bejesus out of me to think that I am going to end my life in that way, with no control, with my family watching for days on end…..thank you for what you are doing and please let me know what I can do to help.
I’m so sorry, Cheryl. I understand the pain of losing a friend in that way. What an awful experience for everyone involved. Do you reside in NYS? We can always use additional patient volunteers. Sending you big love. 💙
I live in Massachusetts. Thanks again for all that you do and for your kind words. Kick some ass out there in NYS!!