209 Countdown Challenge

Life is rushed, filled with endless routines and overlooked moments.

This journal will heavily feature medical trauma, sensitive information and raw grief - please consider your own ability to respect these issues if you continue to read. It's designed for an emotionally mature audience.

Open the Countdown Timer - find joy.

The Art of Observation

One of the most valuable skills we have? Our ability to observe.

The real truth lies in how we communicate these experiences.

Perspective matters.

As I continue my journey, I hold onto the belief that every moment carries potential for greatness. When we endure these absurd times, it becomes possible to question the placement of shifting goal posts.

Let’s celebrate the enchantment concealed in plain sight. After all, each moment counts. But is that enough? I don't believe it is.

This statement continues to echo in my mind. I'm not sure where it originated - maybe from my own imagination or sitting through lectures where I'm encouraged to do something, as if I'm not already doing something.

Truth is, I'm not a political activist. I'm a medical provider. Every day I face complex communication disorders as a behavior technician - which is pretty low on the psychological behavior analyst totem pole. My job parallels this profitable political nonsense and I can't help but see the similarities while also harshly aware of consequences. It brings about volatile emotions.

One of my favorite ways to cope is through writing. Preferably creative fiction, satire, romance, code games, psychological thrillers - anything to help me escape the ever present grief in my world. Yet writing isn't helping me anymore.

In fact, it destroyed my life. Telling others bad news? Requires an enormous amount of tact and buoyancy that I can no longer generate. ~Which led to this site's creation. I love the idea of having a living website. And yes, I'm submerged at this point.

For the last 15 years, I have been responsible for breaking the harshest medical circumstances to everyone I know and love. And despite the hell of it all, I am good at it. I enjoy medical advocacy but right now - I am beyond tired of the social mental hopscotch required because there appears to be no end in sight. Thus, this countdown challenge is my own personal way to move forward.

I don't know where it's going to take me - the next 209 weeks. But I would love to find pleasure from writing again, even if it's just a basic daily journal of boring events in my life.

However my life isn't boring and that also is part of the problem. I have such a rare perspective, that others cannot imagine it. And they tell me this - over and over: "I don't know how you do it." They're honest and yet curious because they see the lived struggle and want to help. In this way, social media could assist with rare medical conditions and provide support to those facing grief but instead it feels like constant exploitation and trickery.

Raising two blind twins? Every day is an adaptive adventure. The amount of coordination required - well, it's a lot of pressure.

Providing updates and keeping others informed - is a critical requirement for managing my kids' health conditions. It's exhausting. Way more exhausting than analyzing political grandstanding - so from that perspective? It's easy for me to follow along with all of the complex unnecessary divisive chaos.

In addition, it's impossible to be exposed to daily survival struggle and not have an informed political opinion. I am convinced there has to be a better way to acknowledge gaps in coverage, discuss institutional policies and fairly distribute resources to all citizens regardless of political affiliations.

Despite that -

I do have bad news to share.

The 209 Challenge was not created for political reasons but for my own personal survival.

On Christmas break - I was scheduled for a sinus surgery but instead I learned that I was in a hypertensive crisis.

Over the past month, my life has been turned upside down trying to regain control over my blood pressure. Even now, there are no answers. I'm on two blood pressure medications and continue to undergo diagnostic tests as doctors try to help me. The latest was a series of ultrasounds on my heart and kidneys. I'm still waiting on the results.

Sure, the political theatre will be annoying and exhausting but for me - I hope I am still alive in 209 weeks. That's the goal. To survive.

I'm only 41. I'd like to live much longer than that date. I was already in the process of rebuilding my life. All the goals I had set for myself - completing my psychology degree, perhaps even finding love again, the ongoing transition of my developmentally disabled teenage kids into adulthood - all vaporized overnight. And that? Is devastating to me.

I do have extensive medical experience and background - I'm not going out without a fight. I have never taken my health for granted - even I knew living this kind of stressful life would one day catch up with me. I'm an active person. I eat healthy. I honestly thought I was doing everything right to counterbalance the stress. I was wrong.

I know it's going to be difficult to cover but what people need more than anything is medical leadership. Being able to document and provide a healthy example of how to navigate complex medical scenarios - actually helps others. I hope I can and somehow turn this into a positive experience.

I've done this type of journaling before in life - when my children were born as micro-preemies. Back then Facebook was functional and it allowed me to update friends and family quickly. It also allowed me to connect with other micro-preemie parent survivors and find hope. That kind of resource no longer exists. I watched it slip away over the years. Along with my support system.

Even today, considering the SM habitats - I decided to post my journal here, on my own website, just to minimalize injury. I have found a lot of support and friends on Mastodon, so it remains my preferred digital home. But many are overloaded with their own complex disability concerns and struggle. And the truth is - SM is not built for writers. I miss the long winded ability to write out struggle and read perspective from an average person, not a reactionary and profiteer.

I do enjoy watercolor painting as well.