Important Disclaimers: I’m NOT a clinically trained medical or mental health professional.
I have a responsibility to do no harm, as a serious medical and mental health activist who writes about topics that are with immediacy regarding life and death, or such as this topic where it’s debatable of when chronically ill patients who aren’t diagnosed with terminal diagnoses, choose non life sustaining and/or life extending measures.
Because this is both a sensitive and stigmatized topic for a multitude of reasons, I’d encourage anyone where this topic could be justifiably upsetting, that they do not read.
I have to balance personally, given the seriousness of topics that I choose to address as an activist, of when I can use humor and when I can’t and usually I select the latter.
I make no mockery of death, serious disease or illness in others, in this case though I may have what’s not considered a slightly twisted take, as it applies to my unique circumstances, and again, if it’s offensive or I’m not clear, it’s not my intention to cause further harm in anyone.
“If it wasn’t funny, it would just be true and that would be unacceptable”- Carrie Fisher
No one’s going to probably want to read this blog.
I sure don’t want to write it.
I guess I can find solace that while I think it’s a topic that needs more discussion to remove stigma and that’s why I write in the first place, should this get read, I can hope it helps others.
The problem is that it’s not going to help anyone that I love and care about the most.
I’ve fought with myself in the last year of wanting a pretty cut and dried advanced health directive.
And the reasons why I wanted it.
While I filled it out in late Spring of this year, had it notarized in the Summer, I didn’t file it with my long term primary care physician until the end of September.
And she just filed it, after me haranguing her about it for the last 2 months.
When I say it’s a pretty cut and dry directive, it’s very simple.
I want my next medical event to be my last.
And because I have a mental health history with ONE suicide attempt, because I’ve been on narcotics, I had to prove to both myself and her, that this was not mentally driven and it was very hard sell.
Right to die and death with dignity topics are already stigmatized.
It’s even further compounded in my case, where I have a minor child where in the state I reside, where I don’t NOT have custody of her, even though she’s lived with my parents for over 10 years, now.
“Possession is 9/10th of the law” doesn’t quite apply to people.
So I have to write a will to protect my daughter,
The little I’ve tried to engage my parents on this topic they don’t want to talk about it.
The few people I’ve mentioned this to and when trying to start a discussion on social media about this topic were more concerned about my mental welfare and made it about that.
This is what I don’t get in our society.
We have NO problem of showing people how we live and why we live in this day and age.
And while you can on an advance directive talk about what makes life meaningful and when it doesn’t become meaningful any longer, that piece of paper is really the ONLY place that one can talk about why they want to die, that’s not rooted in suicidality, something else, that’s also still quite stigmatized and something I also do activism and blog about.
I can’t and I’d guess if there’s a few people like me, who want to talk about it death and life with dignity, and how hard it is to write a will when you have nothing to leave, but can’t talk about it, anywhere else.
I’m even more limited in having a serious suicide attempt (one) in my life, as far as credibility in saying with my complex medical, mental and cognitive health issues, I don’t want to fight for my life, again.
It was necessary in my pregnancies with my children, post suicide attempt and again, when I needed by gastric bypass reversal and by the time I showed signs I was going to stroke out due to Mirena and had Mirena Crashed in 2013, I knew then, that I could fight for other people’s lives, my own while still sacred, I was kinda done.
One of the most life changing books I that I have ever read and what has helped fortify me in my desire to be the best medical/mental health activist I can be is “When Breath Becomes Air” by Dr. Paul Kalanithi.
All I can say as I’ll never have enough words to do justice to the man that Dr. Kalanithi was, let alone what he actually accomplished medically in his short life and what he could’ve had he had a longer life, I won’t even try.
I’ll just kindly but strongly suggest reading “When Breath Becomes Air”, it will make most people want to be at least a better person, if nothing else.
It’s one of the best books ever written, let alone, one of the best books I’ve ever read.
In my case, it made me think more given how limited I am to show being better, of at least being more careful and deliberate about what my legacy will be.
While I’m still alive and when I’m gone.
I just can’t believe though how much more regret I have to endure, having my own unique bizarre skill set,in being able of honoring most commandments but breaking what’s considered most sacred in Jewish Law, not only in life, but in death.
And the struggle of doing that without additionally breaking the hearts or causing emotional harm to those I love the most.
How I had to reconcile my wishes and what I think the wishes of others, will be in my next blog, though.
Note: 99% of this blog was written 3 weeks ago, in where I was with struggling to write a will, after filing my advanced health directive. I figured for ease of reading, I’ll put what I had to resolve in starting to write a will and what feels like some twisted irony, but with some major poignant points, when it comes to that, in my next blog.