With Chronic Illness, I Grieve Spontaneity and Savor the Simple Things

It happens often — probably more than I’d like to admit. In a moment of daydreaming, I’ll picture myself doing something both ordinary and unimaginable. On a crisp morning, perhaps, I awake and throw a sweater over my pajamas. I meander downstairs, stopping in the kitchen only long enough to pour a cup of coffee before exiting the back door and wandering down the backyard, to the water’s edge.

I remain there just long enough to appreciate the stillness of the morning before beginning my hike back up the yard, ready to begin my day. There was no goal or purpose in the act. It was simply something I woke up and wanted to do.

It’s so ordinary, something many wouldn’t think twice about. However, it’s not my reality. For most of my life, I have been tethered to tubes, medications, and schedules. For most of my life, I have been grieving an absence of spontaneity.

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To achieve something like this now would require about 45 minutes of preparation. I would have to wake up, administer my nebulizer treatments, and switch from a ventilator to an oxygen tank, giving my lungs time to adjust to the difference, all before embarking on this small adventure.

Even with this checklist tackled, there are still caveats. How am I feeling today? Am I well enough for this? How will it impact the rest of my day? What is the consequence, and is it worth it? Let’s say all of the above checks out. There is still something in all of this effort that takes away from the sweetness of the result. Do I really want to go sit by the lake that badly?

When living with PH, something like this may have been possible, but the exhaustion and shortness of breath it would have caused early in the day wouldn’t have been worth the trade-off. And that describes much of my life with chronic illness.

I could do it … but is it worth it?

There are many days when I crave freedom from these things that tie me down. With PH, something like deciding to go to a concert with friends, or even going out to dinner in the city, would induce a great deal of anxiety. What would the parking be like? Are there stairs I’d have to climb? What if my illness ruins it for everyone?

While trapped in this mindset, achieving anything can feel like a herculean task. As a response, it can become easy, even habitual, to not make the attempt at all.

Throughout college in particular, I missed a lot — things like a concert in Colorado, a road trip to Florida for spring break. They weren’t things that I could justify, even with proper planning. But there was still so much to enjoy. A family trip to Florida, where my parents could support me, lots of nights with my roommates at a nearby cabin, countless meals out in the city — these are the things that make my life beautiful and worthwhile.

All things considered, it seems the best thing I can do is to capitalize on the moments in life that have a big enough reward to offer in exchange for the effort. Most mornings I won’t find myself waking up and feeling that a lakeside stroll is worth the effort I would have to put in. I can see the water from my window. I appreciate it still — a compromise.

But I also make sure not to hesitate when the things that are achievable and worthwhile present themselves. At the end of the month, my family will be spending a week up north. Along with me, we will bring about eight or nine large pieces of medical equipment. Last year, it took two cars. But the payoff was indescribable, and we know it is absolutely worth replicating.

I would give anything to wake up and do whatever I want, go wherever I want. But I occupy a body that requires more tending than some. And I know that to enjoy anything, I must honor my schedule, my needs, and my medications before taking off. In all of this, I let myself grieve the absence of spontaneity in my life. But I also don’t let myself overlook the life that I do have. I don’t let it pass me by without putting in the work to enjoy the better days.

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.