I first heard Nightbirde’s song, “It’s OK” the night after her America’s Got Talent audition and subsequent Golden Buzzer by Simon Cowell. If you followed her story, she was unable to continue in the competition because of the cancer that ravaged her body. She passed away in February of 2022, just three weeks before my Mom died of ALS. Nightbirde, Jane Marczewski, left a lasting legacy, however. I hope you will check out her amazing life, music, and story at the link above or at Nightbirde.
I had chosen to let Hearing Elmo languish and sit unused on April 8, 2024. Mentally and emotionally immobilized by the adjustment of yet, one MORE progressive disability (vision loss), I had pretty much “tossed in the towel”. Because I am unable to teach now, I felt pretty much like I had no meaning and nothing to convey that would mean anything to anyone. Slowly, I recognized how lost I was in my thinking. Having lived with hearing loss and deafness, Ménière’s disease, MS, and now vision loss, I was unwilling to adapt and learn new ways to do something as simple as WRITE as it meant learning new technology and being kind to myself when writing took 5x longer than it used to create a blog post. I was struggling with mattering, a psychological construct defined by Flett as “a person’s need to feel significant in the eyes of other people” (Flett, 2018, p. 31). Busy (arguably TOO busy) being a teacher, advisor, mentor, disability advocate, and speaker, I found that pouring myself into others with chronic illness and disability was rewarding and fulfilling. Prilleltensky (2020) explained that mattering was more than being of value to others; that it was also GIVING value to others. Once a stroke and glaucoma impacted my vision to the point that it was a disabling condition, I felt like my purpose and ability to MATTER to others was gone.
It took a great deal of introspection, therapeutic counseling, praying and self-determination to discover that it was enough to “matter” to me; that I could see the value of my life… past, present, and future. I have to be honest and admit I hit an ALL TIME LOW before discovering this. I clawed and fought my way back out of the hole I threw myself into by seeing and believing I mattered to myself. I am still learning that this is ENOUGH.
Are You Lost?
If you are a person with disability or chronic illness/conditions, you may feel lost. It really IS ok, for we all are a little lost sometimes! I love what Rick Warren (2012) said about experience in his book, A Purpose Driven Life. Experience is not what happens to you but rather what you do with what happens to you. Choose not to stay lost. Warren goes on to encourage us to use the pain of our loss, our disability, our chronic and perhaps debilitating condition, to help others (Warren, 2012).
A quick search using generative AI, I found a great list of ideas if you are stuck at being “lost”. Please comment and share other ways in which you have MATTERED.
- Volunteering
- Advocacy and Leadership
- Employment and Skill Sharing
- Creative and Artistic Expression
- Contributing to Faith (or other non-profit) communities
Flett, G. (2018). The psychology of mattering: Understanding the human need to be significant. Elsivier Inc., Academic Press. https://doi.org/10.1016/B978-0-12-809415-0.00003-7
Prilleltensky, I. (2020). Mattering at the intersection of psychology, philosophy, and politics. American Journal of Community Psychology, 65(1–2), 16–34. https://doi.org/10.1002/ajcp.12368
Warren, R. ( 2012). The purpose driven life: What on Earth am I here for? Zondervan.
L. Denise Portis, Ph.D.
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