Ty Phillips lives–and parents–in the present moment, despite his chronic illness.
As I lean back into my armchair, I hear my phone vibrate on the window ledge. I reach over and pick it up. My email icon has a tiny 1 on it and I open it to see a an email from the Cleveland Clinic showing, “New Test Results In.” I lean back into my chair with a sigh. Ever since I was diagnosed with heart failure four years ago, these emails are like a PTSD hand grenade. They bring me face to face with the reality of my mortality each time. I hate it.
I sit there fidgeting, hating to open the email. I get so anxious each time. I try to breathe, tell myself I’ve been healing and getting better each day, week, month and year, but it is to no avail. My nerves are firing. I nervously chuckle to myself as I think it would be funny if it was like the Tom Hanks movie and my phone blurted out, “You’ve Got Mail.” My reaction wouldn’t be any different of course, but it’s keeping me distracted as I avoid opening it.
I click on the “open” button, sign into my medical records account and open each test one by one. Vitamin D levels are normal, comprehensive metabolic panel, normal, normal, normal, Lipids count—HIGH. I look at the chart and my triglycerides are off the chart.
How can this be?
Extensive tests, everything falls right in the middle of normal, and yet this, is 16 points above the Extremely High marker.
I look it up and see the connection with heart health and my proverbial heart sinks. I get that pre-panic numb feeling, my feet start nervously tapping at the floor and my chest starts to rock back and forth as my anxiety response kicks in.
“How can this be?” I exercise four to five days a week, my diet is fairly on target, I’m gaining muscle mass again, and yet, there seems to always be something wrong.
I place my hands over my face and begin to rub my eyes. I’m truly frustrated. Learning to be chronically ill is like learning to talk with death on a regular basis. They make it seem so easy in the movies. I’ve come so far yet seem to have been standing still for the past four and a half years. I still struggle with being dizzy every day. I still struggle with panic attacks when I over exert myself, fearing my heart is just gonna say, ya know what, screw you, and stop working.
My daughter is old enough now to recognize when I am not feeling well. I hear her tiny voice break my internal dialogue: “What’s wrong, Daddy?” I look over and squeeze her little hand. “Nothing sweetie, Daddy just has a tummy ache.” Her blue eyes look up at me with all the seriousness in the world and she says, “It’s okay daddy, I’ll kiss it and make you feel all better.” I smile and place my hand on her head.
I look away once she is distracted again and fight the tears that run down my cheeks. I hate that she has to ask me if I am okay. That she knows that I struggle with how I am feeling more than I should. That the medication leaves me withdrawn at times as I internally fight symptoms that trigger my anxiety. I feel guilty.
I crawl down on the floor with her and for those next few minutes, I am just a normal dad. We dress her Minnie Mouse dolls and she pretends to scare me as I pretend to scream in fright. She giggles and I smile. At random, she jumps on me and holds me tightly saying, “I love you Daddy!” I hug her back and tell her that I love her too. Those dang tears are trying to get out again as her innocent gesture offers me comfort.
Sometimes, the struggle is real. The conflict with the desire to live and the reality of death plays over in my head more often than I would like. In those moments, my daughter’s innocence is like a beacon of light bringing my self pity out of the darkness into the sunshine of the present moment. It reminds me that I only have control of the moments that I am truly living in—the moments when I am not hiding away in my doubts, but instead fully awake in her discoveries.
This seems to ring true for much of life. We tend to lose ourselves the moment we become our sole focus, and find ourselves when we are simply there for those around us. Not neglecting our needs but walking away from our obsessions.
I shake my head at myself as I think of another line from a movie—this time Braveheart: “Every man dies, but not every man truly lives.”