By Els Messelis

My eyes don’t line up with one another and that will be for the rest of my life. I have tried to live a full life but realize that I have to live an ‘SOC’ life based on Selection, Optimalization and Compensation. The SOC model was first introduced by Paul and Margaret Baltes as a psychological model of successful aging applicable to a variety of functional domains like cognition, emotion, and motivation (Freund, 2008). This model builds on the belief that across the lifespan, people face certain opportunities (e.g., education) and limitations (e.g., illness) that can be successfully navigated by an orchestration of three components: selection, optimization, and compensation.

Life story of my eyes, seen through my eyes

When I take off my glasses, you can tell I have crossed eyes. But my loved ones have never insisted on extra eye operations, although all the previous ones failed. When I was three years old, I was diagnosed with Strabismus (crossed eyes). A predisposition and the context influenced it: all of my other illnesses made my eye problems come to light.  In the beginning, I never realized what impact this diagnosis would have on my life. 54 years later - I am 58 now - I realize more than ever that I cannot run away from my eye problems any longer because they have become more and more a part of my life and my aging process.

Dr. Annie Brewster, founder of Health Story Collaborative, might not be aware of the fact that she opened my eyes with her health story in March 2022 during the International Congress on ‘The Healing Power of Storytelling’. But she did. The mask came off, even though I had been working for years with life stories of my (older) clients.

As a gerontologist and author, I lecture, read, and write all day long. I like to share this passion and I love to let my clients, students, patients grow. This gives me flow, energy, and happiness. This means that I use my eyes all the time for reading and writing. I do not give them the rest they need so much.

A difficult memory

Some of the experiences I have had throughout my life with my eye problems have been dehumanizing. Up until I was ten years old, I received several treatments: glasses, patching, eye exercises and 4 surgeries. Eyes are complex. Why do I have crossed eyes? Why could eye specialists not fix my problems? So many questions have never been answered.

The optic nerve is a bundle of more than 1 million nerve fibers. It transmits sensory information for vision in the form of electrical impulses from the eye to the brain. I have never known for sure if I have optic nerve damage. I also wonder, do I have optic neuropathy? This is a catch-all term that refers to damage inflicted on the optic nerve. I think this is sometimes the case.

When I was five years old, both of my eyes received surgery. The loneliness I felt when I awoke was hard to carry because I couldn’t see anything. But I did receive a doll who was as tall as me. What happiness I felt when I recovered from the surgery! It still puts a smile on my face.

Another dehumanizing moment happened when I was told at ten years old that I would never be able to earn a proper degree at school: “You will have to live with it, you will never be able to go to University. Your eyes cannot cope with long reading and long writing…” I was perplexed and from then on I had plans to overcome this!

Around that time, I was also ashamed because my eyes were covered and I wore glasses which were too thick to look nice. I looked like I had Goblet glasses.

 When I was 18, I planned to earn a bachelor’s degree in social work, which I did. After that, I became a teacher with no particular problems. The eye problems resumed when I was in my early 30’s. While I was studying Medical Social Sciences and afterwards Gerontology, I had to study for examinations and had just finished my Master Thesis when I began having severe eye problems. A neurologist advised me not to read and write for a month! I had to hold complete rest. I was shocked and astonished. This felt dehumanizing because I wanted to finish my master’s degree on time with good results. Luckily, I had started early to prepare for examinations. I ended up Cum Laude, with distinction. But I was broken. I had to rest for weeks before I could properly read and write.

The same happened again several years later. I had been an academic researcher at the Free University of Brussels. I had finished my PhD. In my ‘little jury,’ I received the advice to review my PhD, but I never did. The combination of my eye problems (one eyeball was gone), a divorce, and the fact my mother-in-law passed away, my energy and motivation were gone.

“Your PhD is too good to throw away, but it needs an in-depth review.”

I had plans to do so, but in December 2006 I met my new partner who had four children; I became Doctor of the Dirty Laundry. My dream to become a PhD in Gerontology was over. It took me more than two years to recover from this, as I always had believed if you start something, you should finish it to the end with good results. I did not take time to fully recover, but started writing articles and books as author or as co-author.

In the summer of  2022, and for the first time since 2006, I have received severe eye problems again. For years I have been working on big computer screens. But all the online lessons and meetings were a disadvantage for my eyes. I could not read the shared documents well. Sometimes I am working 10-12 hours at my PC in combination with social media on my iPhone and my eyes cannot do this much longer. Long reading and long writing is a problem for me, but there are so many books that have to be read and so many other books and articles that have to be written.

Alternative stories: the art to survive

In my narrative work as Gerontologist, I collect lifestories on ‘skinhunger’ and ‘loneliness’. I have come across old and young people who have opened their hearts on very emotional themes, often hidden stories.

I want to share my hidden story. I have always believed that stories have the power to transform individuals as well as the health care system. After being in contact with the Health Story Collaborative, and reading the book The Healing Power of Storytelling, I am more and more convinced.

Lessons learned

Sharing my story can be interesting for me but also for others. Stressing the positive aspects in life and integrating the negative ones by looking for new pathways: it is liberating. Art-therapy, creative writing and using other materials have helped me in supporting my clients. I realize that I also can help me forward. I have started classes on creative writing and I will take an educational course on art-therapy.

It can help me process what comes next, to create new pathways to thrive and even reclaim my personal power amid uncertainty, fear and change. I realize more than ever that I am 57 and that I will come more and more in contact with “normal” eye problems for my age, such as accommodation problems, above my other eye problems. My heart longs to read and write for days, but my eyes often say, “I cannot participate.” I have to listen to my body and make new pathways on my healing journey.

As mentioned in the book of Dr. Brewster, there can be some things realized in the healing power of storytelling. She mentions important aspects such as:

• Process the difficult emotion that come with life-changing diagnosis.

• Move beyond being the hero of your own story to become the author of your own story

• Craft your narrative and share it in whatever medium speaks to you: art, writing, music, audio

• Integrate a traumatic health event into a new and ending identity

• Use applied storytelling techniques to strengthen connections between you and your loved ones

• Cultivate resilience to move forward amid uncertainty and fear

Let us share hidden stories and learn from each other. So we can connect in solidarity, and live in a warm society. This is what we all want, no?

Due to my glasses, most of the time, it looks there is nothing wrong with me, but there is…sometimes in a very severe and bad way. I am so passionate about my work – which is in a huge amount writing and reading – that the spot is always on. Sometimes, my eyes say: “I don’t want to cooperate any longer.”

Life can be compared with roses. Life is often beautiful but we have to cope with the thorns. Integrating them is the way to go but not always easy.

My new goals in life based on the SOC model:

Els Messelis has a Masters in Gerontology and is  coauthor of 13 books on older age. 

Her expertise includes sexuality, intimacy & skin hunger in later life; elder abuse; preparation retirement; and life stories.

Learn more about her here: elsmesselis.com 

On February 4th we held our inaugural annual event, “Making the Invisible Visible”, during which we shed light on the experiences of individuals navigating “invisible” chronic illnesses which are poorly understood, challenging to diagnose, and often dismissed by the healthcare establishment. Listen to our conversation with Meghan O’Rourke, author of The Invisible Kingdom: Reimagining Chronic Illness, during which we discussed the concepts of narrative identity and how Meghan's own experience sharing her story has changed how she experiences her illness today. Experience the power of storytelling as you listen to Katy Morley and Lili Fox-Lim, two courageous storytellers, who shared the challenges and insights they've encountered on their journeys through illness and healing.

By Rita Thompson

Three redheads in a square box on wheels travel into the city with a siren announcing their urgency. I’m the one strapped to a gurney in the back of the ambulance.

Back at the local hospital where we were initially introduced, I thought I was seeing double until my mother confirmed they were in fact two separate people, identical twins. She smiled at the men with tangerine-colored hair and told me she and my father would meet me at the next hospital I’m being transferred to.

I’d never had an Uber ride with two drivers before, so I wondered if this was the hospital’s version of luxury. If so, how many drivers would Stephen Colbert get?

As we cruise down the highway, I hear the twin with more finely tufted hair call back to me.

Do you want us to turn on the radio? Any station you want.

I bet the twins listen to the same type of music my brother does. Bands called Garage Sale and Not Your Neighbor’s Grandmother, or something like that.

I scan my mind for what radio station would best suit the mood of a hospital transfer. I don’t have the energy for hip-hop or the emotional bandwidth for classical. I might consider oldies, but I didn’t anticipate this emergency so I don’t have the number of that station memorized.

No, thanks.

My awareness comes back to the straps holding me down on the gurney. Are they supposed to be like a seat belt?

I realize how strange it is to be facing backwards in a vehicle. Is it more safe for me to be facing this direction if we get in a crash, or is it just more convenient for the twins to take me in and out of the ambulance this way?

Maybe if we got in a head-on collision I'm less likely to be slingshotted out the windshield this way. If the twins were slingshotted out of the ambulance, I'd have to David Blaine my way out of these straps holding me in place.

I’d been steadily losing my ability to stand up without debilitating dizziness for the last year, and then earlier tonight at my birthday dinner half of my face went numb. I could panic, but I’m clinging to the emotional steadiness of my sanity. I know with my body in this questionable condition, my biggest asset is my mind.

After the twins finish their pleasantries with me, they commiserate about the Bruins’ disappointing performance this season. I’m taken aback by their hard pivot to a barbarian sport, but this jaunt is probably mundane for them.

Hayes is better because he is a local guy.

Canadians have better training.

No one has what it takes more than a Dorchester guy.

I wiggle my face to see if I’ve gained feeling in it. I haven’t.

I try not to give into the cascade of fear I'm experiencing when I could be educating myself. I know nothing about professional hockey, and I don’t want this ride to be a waste of time.

Hayes is from Dorchester, I etch into my mind. Maybe I'll be more useful at trivia nights after this trip. I've always been particularly uninterested in trivia, but consistently willing to attend for the appetizers and ambiance.

The twin's banter turns to white noise as I wonder if my parents will find me since this circumstance is new to all of us. I don't have my phone with me, or my pants for that matter, so they will have to navigate the maze of emergency rooms in the Boston medical playground. With five massive hospitals in the same vicinity, I hope they remember I'm in the Beth Israel system and not the Brigham system.

My attention comes back to the foggy rays of light shining from cars passing by. They remind me of my childhood and riding in the back of my mother's cherry red volkswagen.

It was a treat to get the back seat when my older siblings didn't call dibs, especially with a plastic baggie of dry cheerios to munch on. I remember thinking it was so grown up of me to sit that far away from my mother in the car. I established the distance by pretending not to hear her when she asked me how it was going back there. When I was 5 years old, this view I see now was a privilege.

While I'm not exactly itching to be closer to the twins, I want greater proximity to my mother and the opportunity to tell her how I am doing.

The headlights of other cars passing by are implicit of the darkness inside my chariot. What else has happened in this ambulance? Have the twins needed to save someone's life in here? Were they successful?

Panic rabbit hole.

I snap my mind back into focus to stave off fearful tears.

My therapist once told me that her actress-turned-rabbi sister claimed singing is a good way to interrupt a brewing panic attack. It’s unclear to me how judgy the twins are, but I’m not in the position to be choosy about coping mechanisms.

I allow one my favorite vocally skilled divas to become my muse.

Carrie Underwood.

Her chorus starts as a hum and turns into a breathy voiced melody. My voice gets bigger and I soak in the paradox of feeling so alive in an unrecognizably fragile body trapped in a mobile chamber.

Are you sure you don’t want us to turn on the radio?

I decline. I need to feel music more than I need to hear it.

It would be cool if the cars passing by could hear my voice instead of the siren. I want to be as loud as one of those vans that drives around Manhattan asking the public if they love Jesus.

I guess that's one worse place I could be right now. At least I'm not strapped to a gurney in the back of a Jesus van.

One of the twins calls back to me that we are nearing the new hospital. My lullabying voice fades away to the loud silence of what comes next.

Rita Thompson is a Mayo Clinic and National Board-certified Health and Wellness coach who supports clients with chronic illness in building quality of life. She is also a writer and advocate for the chronic illness community.