
A dear friend and fellow “hearing again with a CI” friend, Deborah Marcus, has a knack for capturing the kind of photos that has me sucking in my breath and having to pinch myself to remember to continue breathing. She finds the smallest detail and creates a visual memory by “pointing and clicking”. It’s a talent, and one I don’t have. So I enjoy seeing the small things through her camera lens that I would normally miss. Why do I miss them? I’m not looking…
The Problem With Health Challenges
One of the biggest problems with health challenges isn’t pain. It’s not fatigue. It’s not the stigma. It isn’t depression, anxiety, or any other comorbid diagnosis. In the years I’ve lived as a disability advocate, writer, and mentor, the biggest danger of living with chronic health conditions and challenges is that it can make a person extremely self-centered.
It’s easy to do. No one understands except perhaps others we’ve connected with who “live the same”. The people we love may be supportive or stumbling blocks. They may be our biggest advocates, or the pain in our… erm… behind.
Take Deborah’s photo above. Now me? I love daisies and any type of flora that is yellow and white. But ya know? I’d walk right by this flower and only think, “what a pretty flower!” I don’t stop, grow quiet, get down on my knees, and really open my eyes. If I did that more often, I’d see the gorgeous wee bug. (Entomologist, I’m not…)
It can be the small things that make an ordinary moment in time, something to be celebrated. When we become self-focused, it is impossible to see those small things and we miss celebrations.
Pity Parties are still Celebrations
Don’t get me wrong. I believe it is healthy to have a good ol’ pity party from time to time. After all, a party is a celebration … of sorts. ♪♫ It’s my party, and I’ll cry if I want too…♫♪
Learning to adjust to new challenges can be exhausting. Some folks with chronic illness or invisible disabilities may find it very therapeutic and healing to bawl their eyes out (Borchard, 2014). In “7 Good Reasons to Cry Your Eyes Out”, Borchard (2014), explains all the GOOD that can come from a good ol’ pity party.
But self-pity is dangerous and different than an occasional pity party. Self-pity begins and ends with self-focus. When we are entirely focused on ourselves and our own problems and difficulties, we cannot see the small things and miss the celebration. “We are bombarded with opportunities to feel sorry for ourselves” (Smith, 2004, para. 2) and if we become self-focused our camera not only fails to capture the beautiful bug, but we miss the flower as well. As a matter of fact, we may only see the dusty road in front of us as we trudge along feeling sorry for ourselves.
My Life is Hard. Can I Learn to “Really Look” Again?
Life is hard. I have heard from many readers who live with chronic conditions and invisible illness who know that they will wake up with pain and fatigue, stress and anxiety, and go to bed holding hands with the same bed fellows. However, many of these same people have learned that in spite of their circumstances, they can make a difference.
They have set short and long term goals… and are seeing them fulfilled.
They have reached out to mentor and volunteer… forever changing the life of another.
They have learned to adjust and evolve, rolling with the “punches”… teaching others by example and living with courage and perseverance.
They have learned to stop focusing on self… and can see the small things. They are celebrating.
I’m still learning how to do this myself. Believe me, when I reflect on “things we should do”, I’m sitting in the front row of my own classroom. And sometimes, it isn’t fun. Last week we had StRaNgE weather. It was in the mid-70’s one day, and in the low 30’s the next. Sunshine to snowflakes. For folks with Meniere’s disease this means you walk as if strolling on the deck of a ship – IN THE MIDDLE OF A FREAKING HURRICANE.
Rushing from my car to my 11 o’clock class, I was trying to hurry Chloe out of the wind and drizzle and hustle 100 yards into the building. One thing folks with Meniere’s disease do not do well is hustle. Not even with blinged-out cane and service dog. So I slipped on some leaves plastered to the sidewalk and fell on my hip and rolled to my caboose. I sat there a second with Chloe, wagging her tail beside me, perfectly content for a spontaneous pit stop. Since I was already SITTING, I let her go leash length to do her thang. As I moved to get up, my “no slip” (*rolls eyes*) boots slid some leaves out of the way as I struggled to rise. I noticed that the leaves had left perfect “leaf footprints” on the white sidewalk in a beautiful display of “peek-a-boo” gone right. I stood there and said, “well celebrate THAT!” I’m learning to look, and it only took 10 seconds. I remembered that leaf pattern long after my britches dried out. It was worth remembering; worth celebrating.
I hope each of us who live with significant challenges can learn to see the small things. We can only do it if we learn to look and if we take the time to do so. We can only do it if we stop with what is natural – self-focus and self-pity. I believe no human is stronger than those who live with invisible illness and disability. I’m a wimp with little to no ability to see what is right in front of me. If I can learn, you can as well.
Denise Portis
© 2014 Personal Hearing Loss Journal
Borchard, T. J. (2014). 7 good reasons to cry your eyes out. Retrieved November 28, 2014, from http://psychcentral.com/blog/archives/2009/06/06/7-good-reasons-to-cry-your-eyes-out/
Smith, R. (2004). Self-pity will destroy you. Retrieved November 28, 2014, from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC437127/
“…if we become self-focused our camera not only fails to capture the beautiful bug, but we miss the flower as well. As a matter of fact, we may only see the dusty road in front of us as we trudge along feeling sorry for ourselves.” That and other gems to be found in this wonderful piece. Thank you so much for allowing me to be a part of this story and your journey, Denise! –Deborah Marcus
I find it’s the little things that make the big things easier to bare.
(lately there have been a lot of big things.)
I can’t help but wonder, have you considered getting a walker? I know you have Chloe, and use a cane some…but I use a really cool walker and it has saved me from many a fall. It is a “European” design and I get a lot of compliments on it. Looks like a racer, but has a seat so if I feel off I can sit really fast, and it has saved me from many face plants. Yes I still fall sometimes, normally when I’m not using my walker. 🙂 just a thought…maybe a little less time on you butt. lol
Hey Wendy!
I have a terrific little streamlined walker that I unfortunately cannot use at work right now. I use it when a fall messes up my ankle again, but because I “carry my office with me” in a rolling briefcase with file box bungee-corded to the top, I cannot push, pull, or carry my walker. As an adjunct professor, we do not have secure office space on campus and so everything has to roll with me. I try to always have Chloe in heel and my cane in my right hand to give me the widest possible stance, but it isn’t ideal. Thanks for the suggestion though and I always advocate when asked what the college can do for adjunct and ask for a secure office space to leave some of our stuff! 😃
Sharing – beautifully put as always!