In 2018, it took me spending 4 days in a hospital room with my dad for me to decide to quit my job.
My dad had experienced a seizure and ended up in the hospital in Alabama where he lives. I quickly requested time off my full time university staff job and caught a flight home.
I spent most of my time in the hospital room that week. I watched as incredible nursing and medical staff provided my dad great care that still at times failed to meet his immediate needs. I watched my dad, a man who worked his whole career at a stable government job and retired with great healthcare and a pension, end up in a situation where the only possible choices were bad ones.
I felt utterly helpless.
At the end of the week when things had stabilized slightly, I got back on a plane to Colorado. I told my husband the night I returned that I had made a plan to officially leave my job to start working for myself full time. I didn’t know all the details yet, but I knew deep in my gut that I had to make this choice.
I did not feel like there was any more time to waste.
My father, Edgar Carrasquillo, was diagnosed with early-onset dementia about 8 years ago, at the age of 52. In the years since, we’ve learned he has a rare disease called Pick’s Disease, or Frontotemporal Dementia; similar to Alzheimer’s in presentation with slightly different symptoms, and unfortunately a similar trajectory. It’s arguably one of the cruelest diseases humans experience: you have to live with both the blessing and the curse of a relatively long disease timeline, for a disease that currently has no cure and you know will end with your mind failing you before your body does.
I have rarely written publicly about my dad’s disease, and have barely even talked about it to anyone besides those in my absolute closest circles. How do you talk about the saddest thing that has happened in your life, a thing that is still actively happening? It’s grief in slow motion, for someone who isn’t gone yet, but who can’t really share your world anymore. It is a mountain of complex logistics spread over years, a never-ending series of impossible choices, only to reach an unchangeable outcome.
It has not always felt like my story to tell, but it’s an unmistakable part of my story. It’s something I think about nearly every day, and it has given me a perspective on life and death that has brought me remarkable clarity.
My dad seemed to always make safe and stable choices in his career. While in college to study engineering, he started a co-oping job at NASA; it was basically a guaranteed route to a full time position at the agency upon graduation. From there, he worked a 30 year career as a mechanical engineer at Marshall Space Flight Center. His job always had the rock-solid benefits of a stable government position: affordable and quality health insurance, an employer-matched retirement plan, and regularly scheduled raises. On paper, it’s a dream gig. And I believe my dad really enjoyed and took pride in a lot of things about his work. (I should also mention that I’m super grateful for the childhood it provided me: one where all of our needs were met and we never worried about money or healthcare.)
But if you would have pushed my dad for an honest answer, he probably would have confessed that there are other things he longed to pursue professionally, and never did. I know because he told me, at various points in his life, again and again. He is a highly creative person who didn’t always have a creative outlet at work. He loved teaching, history, acting, and music. He wanted to travel all over the world.
I will never truly know how many unfinished dreams my dad had…but I do know that even the safest, most stable, most secure path has not saved him from the worst parts of dementia-related illness. A sad reality is that his specific illness is likely highly hereditary; his father died from the same disease in his mid-60s. It’s an ending that may have been cruelly written right into his genetic code.
But please do not feel pity, because the truth is this: regardless of the odds we’ve all drawn, we all already know that our stories on Earth will end someday.
There are no guarantees of anything else.
I also spent a lot of my life following a carefully-laid plan. I chose to study music in college, but had the reasonable and attainable goal of “just wanting to make a comfortable living doing something music-related.” I graduated and entered grad school, right on time. I wrapped my grad program, got married, and started a full time arts admin job all within the same summer. I steadily and responsibly worked my way into a higher-paying university marketing gig with better benefits within a couple years. I signed onto an employer-covered healthcare plan the month before I turned 26, right on time. I bought a house with the stable W-2 income and healthy savings at 28. All the while I kept pursuing my music career as a compartmentalized side-hustle: investing tons of time and energy on nights and weekends, taking on a ton of labor, but rarely taking real risk. I dreamt of hitting the tipping point where I could take it full time, but only after every last puzzle piece had carefully been put into place.
And then that Fall week spent with my dad in the hospital, my illusion of control shattered. I understood clearly that there are no sure bets. So therefore: why not take the chance and bet on myself?
I truly haven’t looked back since.
I know this is a heavy topic, and my intention is not to incite fear, urgency, or to force a silver lining.
I can only share my story in hopes that it encourages you to unapologetically craft the life you desire. You likely already know what you want, deep down.
This is not just about your career. It’s about carving out space to make the creative project you’ve always had in mind. It’s about trying something brand new in spite of how it may be received. It’s about taking the trip or launching the business or going back to school. It’s about telling someone special you love them, out loud.
The world is an absolute mess right now. We have seen our collective illusions of control crumble to the ground this year. There are no guarantees of what happens next year or even next month.
What kind of life will you pursue anyways?
One last thing: my dad is currently in late stages of his illness where he is mostly non-verbal. He has very little vocabulary left, and it’s unclear how much, if anything, he remembers. But even last Christmas, he walked to the piano in his care facility for the first time in months, sat down, and played a piece from memory.
Don’t let anyone tell you that art doesn’t matter.
No link roundup this week. I’d love if you choose to spend some time doing something you love that’s off of a screen.
Thank you so much for the chance to share this space and a piece of my life with you this week. Please know that if you’ve had a parent or family member experiencing dementia-related illness, I’m here to connect if you need someone to talk to.
Love and support to you all.
What strikes me most here is that children often solve the life challenges of their parents - we have to untie the knots of those who taught us how to tie our shoes. Ed must know he has raised a daughter who not only is wise, courageous but willing to share to help others live life to the fullest and this must give him great serenity. Thank you for sharing