At this stage, I’m forgoing milestones and simply enjoying life
I've outgrown some of the stressful thinking of my past
The night before my 15th birthday, my mom looked at me and took a moment. Then with love and a bit of bluntness, she said, “Every year is a gift.”
It could’ve been a general statement regarding the fragility of life, but I knew better. Instead, it was her way of acknowledging my terminal prognosis while living with pulmonary hypertension (PH). It was something we rarely talked about, at least not directly.
Most of my thinking while growing up echoed some form of this sentiment. Every milestone I achieved and every age I lived to see felt sacred and miraculous. From a young age, doctors told me that I was dying, which created a block in my mind regarding my future. My mindset always reflected it. I couldn’t help but feel desperate for my continuing existence, and thinking past the day to day broke my heart a bit, knowing that no one could promise me anything.
Now that I’m older and capable of reflecting on the impact that prognosis had on me at a young age, it’s clear that was a heavy perspective to carry as a child. But it was also the reality of my circumstance, and I know it’s shaped many things I appreciate about how I approach life.
I also know that some part of this thinking still lingers within me. Each birthday is unfathomable, and every holiday is a blessing. Every time a noteworthy calendar date passes, there’s a small but persistent voice inside of me that can’t help but ask, “Is this one the last?” I’m not sure I’ll ever feel fully healed from that mentality.
That said, adulthood has brought some relief from this thinking. While I know there’s plenty to look forward to, something about my reaching adulthood feels like I’ve made it to the future I never believed in. The many milestones that plague the early years of life, like getting a driver’s license or graduating college, are behind me. The rest of the story feels like something I’m allowed to shape outside of society’s checklist.
My primary goal now is to be present in my life and take advantage of the time I have, rather than feeling the pressure of what I might one day miss. I want to make the most of the good days when they come, rather than letting an indefinable future overwhelm me.
Fortunately, I have plenty to celebrate. At this stage in life, some friends are getting married while others are raising babies, bringing attention to a new era of milestones. I just celebrated my mom’s and sister’s birthdays, and while summer felt too quick, we’re now headed into fall, my favorite season.
With a settled heart, it all feels a little sweeter, and I’m grateful to have outgrown some of the stressful thinking regarding my prognosis. There’s no longer a checklist before me, only a beautiful life to be lived.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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Jane Price
My daughter was diagnosed at 3.5 yrs. How do I protect her from the load of this diagnosis. She is 10 now.