A Walking Miracle On dying and the return.

On May 26th, 2022, my brain exploded two days after my heart stopped for three minutes, and I survived what is known as a “near-death experience.” Except it wasn’t near death; it was very much actual death.

What has followed since has been a series of expectations that I return to normal. These expectations are handed down by doctors, therapists, specialists, family members, and community members who “just can’t handle sick people.” The expectation includes me forgetting what happened, not holding the person who obliterated my life accountable, nor seeking justice from the system that hired her and, more often than not, condones deliberate carelessness by medical staff, dismissing it as being “overworked and underpaid.”

This is an excuse, a very broken crutch my therapist leaned on in our most recent session, causing me to erupt in a righteous rage that I do not regret even a second of.

She was whining. I needed her to stop. I need all of you medical and mental health care professionals to stop. We all do. It is your job to do your job. We understand that you are overworked and underpaid by a system you thought you were going to change. You chose this job. You have a choice now as we slide into what is to likely to be a devastating four years for disabled people facing catastrophic outcomes in a healthcare system that has already crumbled. Yes, I said crumbled, not crumbling, because we are already there. We have been there for quite some time. I know this because I spent over five years as a clinical headhunter and PHR in one of the most competitive markets in this country—NYC.

As a headhunter, I knew five minutes into the interview with a series of short questions whether a candidate was going to be able to serve their potential patients with clarity, conscientiousness, compassion, and character. These essential values in medical care were my litmus test, the four C’s of hiring clinical staff from C-Suite to LPNs, from patient advocates to LCSWs.

If you can’t work in your current position as clinical staff with the four C’s, then you should not be working with patients in any capacity.

I said it, and I mean it.

I say it bluntly and directly as a former clinical headhunter and as a patient who suffered the most egregious act ever to be perpetuated by a nurse in a hospital setting. The event, my event, is unprecedented, so much so that I am a case study. So much so that when I walk into several of the hospitals and clinics here in NYC, medical staff know exactly who I am. Some of them have the luxury of choosing not to treat me; they literally turn me away because they are scared. I am punished for their fear of someone else’s mistake, a colleague of theirs. They punish me over and over because I exercised my rights and currently have a major lawsuit in play to seek justice for a medical negligence-inflicted permanent disability.

This is a justice I may never see, despite being told I am a walking miracle. Yet, I don’t feel like one. As a matter of fact, there is nothing miraculous at all about the aftermath of a rare type of stroke that I managed to survive, beating the odds of what is often unsurvivable.

The stroke, or rather strokes, I endured were two simultaneous strokes in my cerebellum. Cerebellum strokes are rare; dual, simultaneous ones are even rarer. I know this because no one told me what to expect; no one shared outcomes with me until I did my own research. It was at that point, armed with what really amounted to very little information, but at least more than what I was given from supposed medical experts, that I began a fierce advocacy for myself.

This advocacy is a daily routine. There has not been a day since May of 2022 that I have not had to get on the phone, write emails, or show up at offices just to advocate for myself against a barrage of laissez-faire attitudes amongst doctors tasked with providing what is supposed to be the best care possible. Inevitably, I end up doing someone’s job for them.

Just like I had to do my own research, because no one told me anything.

They did not tell me that cerebellum strokes are one of the rarest types. I already knew what dual strokes were, but no one told me about expected outcomes except for a very shortened life expectancy. People who have my type of stroke typically do not live that far into their 50s or 60s if they even survive the initial stroke(s).

No one told me that cerebellum strokes cause permanent damage that cannot be rehabbed with therapy. They did not tell me that cerebellum strokes cause permanent personality changes, deficits with gait and balance, nystagmus, a complete breakdown in executive functioning, and a total impairment of memory function.

No one told me, so I had to experience it for myself. Experience it I have. Every single outcome listed is my outcome. They are what I live with every single day.

Instead, I get told, by doctors, that I “look great,” so therefore I must be fine. I am not fine. I am not even close to fine. I am the opposite of fine, and I will be for the rest of my very shortened life.

But, Van, you can write! You are an incredible artist and beadweaver.

That’s great, but I cannot fill out forms; I cannot write my own name legibly; I cannot cook complex meals like I used to; I can’t read books like I used to at a pace of one every two days; it takes me months to read just one book. It took me four days, after no one had the time to help me, to figure out how to fill out my passport renewal application. Sometimes, I do not have the ability to watch films or TV shows all the way through. And as for that beading? I no longer can produce intricate beadwork.

I have no memories of a good percentage of my childhood and adult life. I no longer have a photographic memory or ticker tape synesthesia. I experience time blindness and face blindness.

I worry that someone will suddenly decide that because I have these conditions, I cannot live on my own or be independent despite me proving since 2022 that I am and can be; I just live a very different life than able-bodied people whose brains weren’t obliterated by not one but two forms of rare strokes.

Am I a walking miracle? I don’t think so.

There is nothing miraculous about being ignored by the medical industrial complex and the agents who work for it. There is nothing miraculous about being patted on the head in an act of apathy towards a patient that doctors have given up on because the damage done is permanent, and they, as doctors or medical/mental health care staff, have decided I am not worthy of fair, concise, helpful, and timely treatment because I am going to die anyway sooner rather than later. There is nothing miraculous about having to scream at people to do their job after you have been the direct recipient of a pattern of medical neglect as well as hostility.

At this point, I am pretty sure you are curious what happened in therapy. Is my therapist still my therapist? Yes, she is. As a matter of fact, I laid all the cards out on the table, the same cards that are spread out here. I told her I needed her in the trenches, that all of us need doctors, nurses, therapists, etc. in the trenches with us.

Yet, even if someone like me is a walking miracle, you are still required to do your job. Do it so your patients don’t have to suffer trying to do it for you.