Disability Milestones Created a Painful Identity for My Mom

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by Christie |

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If I asked you to identify yourself, what would you say?

“My name is …”

“I am a …”

“I work as a …”

“I was born in …”

There are an infinite number of ways to define and describe ourselves. If each facet of our personality were an ID card, we would all have a wallet too large to carry.

As we grow, we collect new identities and discard old ones. Some identities stay with us for life, and some morph as our opinions and interests change. As long as we live, we never stop changing and collecting new ID cards.

One new identity that was hard for my mom, Holly, to accept was that of a terminally ill person. She struggled to accept her idiopathic pulmonary fibrosis (IPF) diagnosis and the progressive disability caused by her disease.

As her IPF advanced, the adaptations she faced made it hard to deny this new part of her identity. Her doctors advised her to get a handicap parking placard. She called me after she left the Department of Motor Vehicles, crushed. She didn’t want to need one. She didn’t want people to look at her, with her invisible disease, and judge her for claiming a precious front row spot in a crowded lot.

For my mom, claiming that handicap spot was more than an accessibility need — it meant claiming her disability and accepting the brutal reality of her terminal disease.

While accepting her new identity was an internal fight, she also struggled to navigate public spaces as her disease progressed. She couldn’t walk far or stand for long. She tired easily and suffered from shortness of breath, along with other symptoms.

In some instances, a shorter walk, a cut in line, or a chair in the shade would have helped her. But she didn’t always want to pull “the disability card” to be accommodated in public spaces. She didn’t want to concede to her illness, and she certainly didn’t want to exploit it, even when her right to accommodations would have benefited her.

When my mom started using supplemental oxygen, a nasal cannula attached to portable oxygen in a backpack made her disability visible. Using oxygen made her feel so much better; she knew she needed it, but she didn’t want the cannula to be the first thing people noticed about her.

She bought a purse designed to carry the portable oxygen concentrator that was more stylish than the black medical backpack it came with. She also purchased oxygen glasses that had tubing and nasal prongs built into the frame. The cannula hooked onto the end of the temple pieces and delivered oxygen to the frame. Without tubing running across her cheeks, the glasses made oxygen use more discreet.

When at last her disease forced her to retire on disability, she didn’t celebrate. She didn’t feel the joyful closure that a typical retirement would have brought. Ending decades of hard work on someone else’s terms was painful.

It was a late summer evening when she called me to share this news. I was at a beer garden with my husband and brother-in-law. It came as a complete surprise when she said, “Today was my last day of work.” I wanted to say we would raise our beers to toast a job well done. I wanted to brainstorm all that she could do with her newfound free time. But I didn’t. I was still largely ignorant about the reality of her illness, but I sensed that her retirement felt more bitter than sweet.

Not long after that, I went home to visit my folks. I hadn’t seen my mom since she was diagnosed, and while I knew she was on oxygen, it still felt new to me. I stayed up late one night just watching the oxygen concentrator hum in the corner. As it huffed quietly along with my mom’s rapid breathing, I started to consider my own new identity. I was a child with a very sick parent.

I didn’t have the words for her sickness yet. I didn’t know the prognosis. But as I stared at that machine in the wee hours, knowing how important it was, I felt very small. I felt like I had a new identity that most of my closest people wouldn’t understand. It was very lonely.

When I think of that now, I realize how very lonely my mom must have felt as she grappled with her new identity.

Her disease then progressed so quickly that there was no more time to grapple — only to accept what was. We dreamed of a day when my mom would no longer identify as a terminally ill person. After months in the ICU, she received the ultimate gift. Now, my mom is proud to identify as a lung transplant recipient.

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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, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Comments

Lori Ward avatar

Lori Ward

This was beautifully written and I could relate to your Mother's feelings as I am recently diagnosed with IPF. Unfortunately, I know all too well what lies ahead as I watched my Dad and two of my sisters die from IPF. My other two sisters and myself have it as well. My 54 yr old nephew is also proud to identify as a lung transplant survivor! Our family's faith carries us through, along with the love an support of others. It is inspiring and heart-warming to read stories like this from others who are on this journey with us! Thanks for sharing! God bless you!

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Christie avatar

Christie

Hi Lori, thank you for the compliment on my writing. :) I'm sorry to hear that you've got familial PF and have had to witness this disease in action more than most. I hope that you find the best path for you through this illness. If transplant is something you are pursuing, my wish is that you and your nephew can celebrate that miracle together. Wishing you the best,
Chrsitie

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Pamela Coleman avatar

Pamela Coleman

This has Bern good to read. You DO feel like your identity has Bern taken away. Covid has had an affect on all of us, isolation, loneliness, and fear. Illness on top of that and worsening affects, oxygen full time with lack of sleep and compassion with looks are hard. Loosing what you used to do so easily is heartbreaking. Support and love help, but there are days I want to scream!!! Thank you for this opinion and story. Pam Coleman:Crewe, Cheshire

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Christie avatar

Christie

Hi Pam, thank you for sharing. It is a hard moment in history to also be struggling with chronic illness. The isolation and fear that COVID has brought are serious consequences that hit this community especially hard. Even when it feels like it, just know that you aren't alone. If you ever need support, you can find us chatting in the forums here on the site.
Sending hugs,
Christie

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Louise avatar

Louise

You could have been writing about me. Everything you described is how IPF has changed me and my life over the last two years. It brought tears to my eyes and I am delighted your mum got a transplant and hope that she continues to do well. I am praying someone on the transplant team in London will agree to put me on the list for one.

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Christie avatar

Christie

Thank you for sharing Louise. I think it's really common to feel embarrassed and disappointed when you have a progressive illness. It can be dehumanizing to have your independence taken away by poor health. Know that you are not alone in that. If you ever want to talk about it, we have a great community in our forums here on the site. We're here to support you!
Wishing you the best with your transplant team out there in London!
Christie

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Diana Schmitz avatar

Diana Schmitz

Thank you for your story. Being post lung transplant, I have swept some of those memories under the rug while I learn to live and enjoy my time here. But reading about what I, too, experienced like your mom, makes me cherish this day even more, some how. Thank you.

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Christie avatar

Christie

Thanks for sharing that Diana, you aren't alone in wanting to push those memories aside. Our brains can be pretty good at self-preservation when it comes to big traumas. I know that my mom chooses not to think about a lot of what she went through. She will get through it in her own time. Writing has helped me process my own trauma around all of this, but I know facing it so head-on can be really tough. It's not the right method for everyone. It just takes time... and enjoying that time and celebrating your second chance at life is a great use of energy!

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Kathleen Golding avatar

Kathleen Golding

On reading your article I have also been dagosed with the problem and also to be told that I am to old to have a transplant, can you help,
Kath Golding

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Susan Kennedy avatar

Susan Kennedy

I would like to know about lung transplants.Can anyone help me?

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