Healing Versus Wholeness in the Face of Incurable Illness
Over the years, I’ve become familiar with it: the discomfort that others feel in the face of the incurable. When sharing my story, the sum of responses consistently averages to something similar:
“Will you always need to have a trach?”
“When can you get rid of your IV pump?”
“You won’t have to live with this forever, will you?”
Everyone wants to know the same thing: “When will it get better?”
This revelation began to weigh heavily on me throughout my time in college. It’s difficult, always being made to feel like something that’s yet to be fixed. Even worse is when no true answer is available, leaving you in the world as a riddle that others simply cannot solve, something they may choose to give up on.
I attended a small Christian university, and during my years of undergraduate study, well-meaning peers were quick to offer their prayers for my recovery and healing. Some in this community will argue that a lack of healing is the result of poor faith. Others are simply uncomfortable with the stagnancy of an incurable ailment.
Observing this firsthand sent me on a deep search for my understanding of healing and wholeness, and what these concepts meant to me within the context of my circumstances.
Defining healing for myself meant understanding my normal baseline. Setting boundaries for my health expectations was a way to safeguard against disappointment. During my life with pulmonary hypertension, it was unrealistic to pray that I would one day wake up completely free of symptoms and illness. But this didn’t mean that I couldn’t hope for more good days than bad ones. It didn’t mean that I couldn’t strive for my best personal outcome.
More importantly, I discovered that I valued a focus on wholeness over healing overall. Knowing that physical restoration was not likely in my immediate future, I began working on wholeness within myself. This meant seeking internal peace and resilience. I worked to build an interior strength that could help me endure the physical trials I was facing.
Wholeness of heart and mind is what I wish acquaintances would champion for when they provide well-wishes. I know it’s unsettling to accept brokenness. It’s not something we do easily. But I’m a full human, with so much more at stake than my physical health. And honestly, salvaging my mental and spiritual well-being feels like a pretty worthwhile endeavor in the face of that which cannot be repaired.
It’s human nature to hope for the best, to yearn for resolution in the midst of despair. But for those of us who are left in the middle of something that cannot be fully reconciled, it’s important to redefine what resolution looks like. My inability to achieve what others wish for me is not a failure, and there is success to be found in what I become despite it.
I have to play my own devil’s advocate and acknowledge that well-wishers and prayer warriors have never been my enemy. And I cannot be upset by another’s good intentions for my well-being. I’ve been so fortunate throughout my health journey to be surrounded by the most tender support system, and I don’t take any of it for granted. But I also know that, at the end of the day, I’m the one who is left to occupy my own brain and body. And I need to be able to reconcile the world’s hope for me with the reality I’m living.
I don’t consider any of this to be any form of defeat or resignation. I believe in miracles, and I’ve even witnessed them in my own life. But I also have had challenging days when the pressure the world places on me to either heal or perish is overwhelming. And finding a way to have peace in this body as it is now, to live out this story that refuses to resolve neatly, is something I will fight for, despite what society demands.
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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Claudia Jean Evans Rouse
Thank you! My spouse is also trying to find her way.