Alz Well: Terminal Illness and Anxiety

Four-to-six year life expectancy (on average) after diagnosis. It was the first or second time I’ve seen my dad cry. He called a family meeting, told us he had Early Onset Alzheimer’s, and then we went to dinner. My head pounded harder with every trivial conversation pretending not to be shaken by his death sentence. I threw up in the bathroom and we drove home. He asked if I got those headaches often, if it was the food, if I had enough water.

I wanted to scream. I hated that the attention was on my migraine and not on him dying. But, it hurt too much to talk and he wasn’t really dying at that moment. There wasn’t a point in making the vibe uncomfortable because everything was okay.

I conditioned myself throughout life not to worry because everything would always be all right. My bedroom was on the second floor growing up. Someone could climb the tree outside, break my window, and have tea with me and my stuffed animals if they wanted to. I had a lot of nightmares!

My parents reminded me an FBI agent lived across the street and another one two doors down. They introduced me to Bob Marley’s “Three Little Birds” and I played it on my walkman every night.

They read Little House on the Prairie and introduced me to the saying “all’s well that ends well.” The dust storm that wiped out the entire fall harvest wouldn’t get the Engels family down! They would find a way to make it through the winter! They always did. Everything always ended well. I eventually got it tattooed on my body and lived with a follow-your-fear mindset.

I fell in love with rollercoasters, galloping horses, and cliff dives. I looked forward to getting shots. I equated strength to stoicism. I adapted a lax exterior because the worry within would inevitably dissipate.

When my dad told us he had a terminal illness, I immediately went into this-is-fine-let’s-get-productive mode. I thought about the memories I could preserve, the movies I could make, the things I could do to make everything okay. I felt the track of my life derailing, but had this optimistic and romantic image of laying new tracks in a new direction to keep the train chuggin’ along.

My original plan was to study in Los Angeles, pursue my dreams as a screenwriter / film development executive, and live a life in LA. Then the whole “dad dying” thing popped up and I decided I would graduate a year early and stay on the east coast to be closer to family.

I signed up for 26 credits, led an organization, and struggled to find the time to call home. I walked at graduation and jumped right into working on film sets and starting a business.

Somehow I still never found enough time to call home.

Truth was, I did have time. I had pockets of 30 minutes all the time. But, I needed more time than a phone call. I needed time to buffer the beginning and end of the call to build up the emotional and mental energy to appear okay. I had to de-scatter my brain and find the strength to call the people who taught me to stay optimistic even when things got tough.

Me (in so many words): “I’m living the dream. I went to the college of my dreams and am doing what I love with people I love. I feel supported and am building my craft and learning everyday.” (Somehow I still feel like I’m drowning.)

I could tell them I was doing great, but could never add in the “I need help” part without sugarcoating it with an optimistic sparkle at the end.

Me (sugarcoating): “Eh, well! It’s just one of those times that is hard in life and it’ll get better. It’s just hard now.”

I would feel so exhausted from putting on an act. I realize now I wasn’t admitting anything to my parents (or to myself) because once I told them (myself), I would be accountable for making a change.

I’ve become increasingly aware that my inner dialogue and exterior behaviors are symptoms of an illness that work tirelessly to go unnoticed.

I’m realizing that “well” is not just barely getting by and feeling like I’m drowning. “Well” is not racing thoughts and chronic migraines. It’s not feeling shame for emoting and weak for letting someone in. It’s not excelling on the surface while suffering in the core. “Well” is not fulfilling a self-sabotaging prophecy when I can’t give 100% to commitment after commitment.

I’m seeing how my anxiety has impacted my relationships, my work, my health. I’ve seen how terminal illness has jumpstarted my overly analytical brain and changed my outlook on life.

Mortality becomes a first date conversation and a lesson plan for youth. Some friends bring Tostitos to a party, I bring existential-conversation-and-responsibility-to-bring-about-positive-change-in-this-world-WHILE-WE-STILL-CAN. Death becomes a thing friends “want to just be there for” and I struggle to tell them I don’t want them hanging around in my darkness.

Sometimes I begin to feel resentful of the naïve, driven, and ambitious “all’s well that ends well” life mantra. I took risks because I trusted they’d end well. If I hadn’t followed my fear the past few years and overstimulated my fight-or-flight response, would I be mentally better right now? Would I still be proud?

If I define “well” as having learned and done a lot, I’ve been doing very well. If I define “well” as living a happy well-rounded life, I have not been doing well. “All’s well that ends well” can be applied to pretty much anything if you adjust your definitions.

I wouldn’t go so far as to extend the definition to my dad’s life ending without him knowing how incredible it was, how many lives it impacted, and how much he is loved. Alzheimer’s just sucks. I don’t think there’s a real silver lining there, besides realizing life’s a wobbly toddler — it breaks things, but it’s kind of funny and endearing at the same time.

The train on the track towards living well with my anxiety is racing against my dad’s train towards death while his brain deteriorates along the way.

His illness has pushed me to understand my own. It’s a definite track adjustment and I’m scared of it. I’m scared of what success — personal and professional — can come about when self-sabotage gives way to self-care. I’m afraid of how silly that sentence sounds.

I just hope I’ll be able to tell him fully, authentically, and audibly, without sarcasm or cynicism, how much he means to me before I’m just a distant face at the annual holiday party.