Mourning the Deaths That Can’t Be Counted

Mourning the Deaths That Can’t Be Counted
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There is a phenomenon in psychology known as “lost possible selves.” Possible selves are the heroes in our life story that we create within our inner narrative. They are made from goals and wants, fears and risks. They represent the infinite possibilities, expectations, and desires for our lives. They help shape our identity and every step we take in life.  

Possible selves inhabit a part of our mind that is full of hope and quiet expectations. Each change or obstacle we face may alter or eliminate our possible selves. And while some desires are unreasonable or impossible, the possibilities for our future selves remain infinite, even in adversity. We can’t bring someone back from the dead or unlearn a terminal diagnosis, but we can adjust course within the confines of our changed reality. We can proceed in any direction within “the new normal.”  

It is when we are unable to accept a changing reality that regret and resentment grow. When we veer right instead of left and find ourselves suddenly at the bottom of a cliff, we cannot ignore the fall. And when we keep thinking about what might have been on the other path instead of seeing what’s in front of us now, we get stuck in negative and unproductive thought patterns 

We need to reckon with our lost possible selves and put them to rest to move forward. This process of reimagining our story can take a lot of time. The pain can be debilitating some days, and other days it will feel as if nothing has ever changed. Swinging between overreaction and under-reaction is a way for the subconscious to find the still point in the middle — solid ground on which to build a new possible self.   

We lay the foundation upon which we build our new possible selves on many thousands of dead possible selves. We always notice the big losses, but most of our possible selves pass quietly when we make choices that change our course in subtle ways.  

And then there are the possible selves that rip your heart to shreds when they go. These losses are life-altering. They can take away your identity, strip you of your purpose, destroy your livelihood, separate your family, and leave you reeling. We all face these losses throughout our lives — they are the great undoings that can’t be corrected. Author and entrepreneur Hank Green describes this feeling as “the sudden obliteration of expectation.”  

As a patient with a rare and fatal disease, or as a family member of someone with pulmonary fibrosis, you likely have felt the sudden obliteration of expectation.  

With all that 2020 has brought us, people the world over have experienced this phenomenon together. We all have had to grieve for our possible selves while maintaining hope that there will be some semblance of familiarity on the other side of the coronavirus pandemic. We already imagine possible selves who live in a world with COVID-19 vaccines and treatments. 

For much of the time my mom was in the ICU, we dreamed about the things we would do after her lung transplant. We created possible selves that gave us hope and energy to keep fighting for her life. We talked about traveling the world and having fun in Hawaii, where my husband, Jonny, and I were supposed to move two weeks ago. We started planning the long-awaited wedding reception that Jonny and I hadn’t been able to have since we eloped in 2016.   

Smaller goals were ever-present. From her bed in the ICU, with a tracheotomy and a nasogastric tube, my mom imagined a future possible self who sat outside and drank lemonade. In envisaging her post-transplant life, she could enjoy retirement. She could get back to a life without illness. She could meet up with friends for lunch, take art classes, and go for hikes. That life was a reality for about six months before the novel coronavirus arrived in the United States.   

Many of those possible selves can’t exist in the world of COVID-19.  

It’s hard to accept that after all she’s been through, my mom has to reimagine her future yet again. With a compromised immune system, any possible self that isn’t staying completely away from anyone but my dad —including me — is taking too great a risk.   

We have all had to make adjustments in this new world, but I know how much harder it is on people with rare and chronic illnesses. It’s just not fair.  

I won’t ask you to look for silver linings — you’ll see them when you want to. But I am sending you my hope that some new possible selves are starting to grow within the boundaries of this new world. There are infinite possibilities, after all. 

***

Note: Pulmonary Fibrosis 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 Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Christie is a life-long explorer of the Wild West. She now resides in the Hawaiian Islands with her husband, Jonny, and their two four-legged friends. Christie is a full-time freelancer, nature lover, and business owner. She took a break from work in 2019 to care for her mother, Holly, before and after her double-lung transplant. Christie’s column documents the experience of her mother’s IPF progression, months-long hospitalization at UC San Francisco, and life-saving transplant. She hopes that her family’s transplant story can provide a unique perspective for other IPF patients and family members.
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Christie is a life-long explorer of the Wild West. She now resides in the Hawaiian Islands with her husband, Jonny, and their two four-legged friends. Christie is a full-time freelancer, nature lover, and business owner. She took a break from work in 2019 to care for her mother, Holly, before and after her double-lung transplant. Christie’s column documents the experience of her mother’s IPF progression, months-long hospitalization at UC San Francisco, and life-saving transplant. She hopes that her family’s transplant story can provide a unique perspective for other IPF patients and family members.

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4 comments

  1. Richard Harper says:

    Lovely words.
    My brother died of IPF on the 22nd August 2020.
    I am not sure that the world has woken up to this terminal condition.
    God bless,
    Richard Harper
    Worcestershire
    England

    • Michelle M Jones says:

      My mother had IPF, and choose to leave this world on her terms thanks to MAID on April 28th, 2020. She had already moved to compassionate care. Watching the decline and her freedoms slowly taken away as it progressed was heartbreaking. I wish she would have had a chance to read this article – I believe she would have connected deeply with it.

      • Hi Michelle,
        I am so sorry for your loss. It inspires me that your mother had the courage to live her life how she wanted in the end. That is a hard path to walk down, and you must have had incredible courage to walk it with her. Thank you for your comment. I know columns like this that wax poetic or get a little too philosophical might be a turn-off for some readers, so appreciate knowing that she would have connected with it.
        Christie

    • Richard,
      Thank you for your comment. I am so sorry for your loss. You are right, most people live in blissful ignorance of this disease. IPF is considered a rare disease, and is commonly misdiagnosed as COPD or even heart failure. It is our hope at Pulmonary Fibrosis News to spread awareness of this disease and make it easier for people to be diagnosed and treated early on. I know your wounds are fresh, but keep talking about your brother. His life was important. Much love,
      Christie

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