The Path Of Living With Chronic Illness
By Lauren Jonik
“Where do you see yourself in five or 10 years?” Erik asked as we waited for his business partner’s arrival. Dishes clanking and the collective chatter of other diners filled the air. “Beautiful Day” by U2 echoed from the speakers high above the din in an Irish pub in Brooklyn on a late Spring evening. The dark wood of the decor contrasted with the light I saw everywhere in everything. Success was close, it just had to be.
When Axel arrived, I had already answered. “Oh, I want to be married with a baby.” Erik’s stunned expression revealed that I was not yet considered a New York professional woman. I was a naïve, 27-year-old from the suburbs of Philadelphia who hadn’t even graduated from high school. I succeeded adeptly, however, in avoiding explaining why. Real women don’t fall ill with chronic illnesses when they are 14 and have to drop out of ninth grade.
“I meant, where do you see yourself in our company,” Erik clarified pointedly. Cheeks flushing, I was grateful the lighting was dim.
“Hi guys! What will you have tonight? Oh hi, Erik,” a perky blond waitress holding a small notepad bounded over to our table at just the right moment.
Though I had been working as a freelance music journalist, I was eager to join the music management firm and work in supporting artists in the business aspects of their careers. But, I saw myself as being a wife and mother, too. It was both the norm and the epitome of womanhood in the small semi-rural town in which I was raised. I envisioned myself healthy and not only doing it all, but doing it all amazingly.
During my childhood in the 1980s it was possible for a family to have a middle class existence with only one income — usually as long as that income was generated by the male parent. My mother witnessed her sister and other friends who had become single through divorce or death of a spouse struggle financially, despite being college educated and diligent. I wanted to earn my own money and be self-reliant. I felt conflicted wanting to be the ideal wife and mother as it was presented to me, but knowing that that meant doing the work of the leader, yet only being given the power of a follower.
Chaos exploded in my body at puberty. My world began to fall apart. Mean girls at school made life miserable. Boys no longer looked in my eyes when they spoke, but at my chest. I felt dirty and confused as grown men did the same as they peered through a small window in the door of my aerobics class at the YMCA. Family stress boiled under the surface.
My increasingly sensitive being could not ignore what was breaking all around and within. My driving need to be perfect meant that receiving a grade less than 100% devastated my only sanctuary: being book smart.
I wanted a rescue, a way out, but I believed fairytales only happened to children, not children who felt like adults for as long as they could remember. It shouldn’t have been a surprise when I got seriously sick and didn’t get well for the next 12 years. As I was becoming a woman, I stopped wanting to be in my body. I learned to live on the outskirts of my flesh and in the secret depths of my spirit. I learned how to hold on. To wait.
After a decade had passed and I convinced my body to allow wellness to flourish, albeit temporarily, I dove into life and to pretending that I had been “normal” all along. I avoided questions about my past through redirection. Most people loved to talk about themselves. I let them.
In my late 20s, it was still a given that I would have a husband and children. Didn’t everything just fall into place and happen naturally? I took for granted the effort of something so seemingly common. I had survived a serious illness. Shouldn’t everything be easy forever after?
The aftermath of tragedy has a way of distorting the view of the present — of how things are and how they should be. Surely Prince Charming was on his way, though slow in arriving. White horses could be temperamental. That must have been it.
I had grown-up with middle class advantages, but illness rendered them useless. There is a privilege that transcends socio-economic boundaries that I no longer had unrestricted access to: health. Even when well enough to rejoin the world outside of the four walls of my bedroom, staying healthy was a battle. I constantly worried that I would get seriously ill again. At 32, I began putting myself through college. I dipped my toes in at a local community college and soon realized how much I loved the academic environment. I worked hard and thrived in my classes.
It was difficult going to school while working and never feeling 100%. But I graduated with an Associate’s degree and a scholarship to my dream school — from which I graduated with a Bachelor’s degree and a 4.0 GPA. During my final semester, I attended classes with an undiagnosed hip fracture, hobbling there and back, often needing friends and strangers to help me walk even a few perilous steps. The physical pain seemed like something I could endure — after all, I had had practice. I needed to set things right in my own mind and heart, needed to complete what I set out to do seven years before.
But, it came with a price. A year later, I had to decline my acceptance to graduate school in my dream program because of health, because of still being unable to walk without assistance. Chronic illness and injury has taught me — is still teaching me — patience. These days are not a consolation prize for what I didn’t win, for where I didn’t or couldn’t succeed, for a better life I might have had if only. . .They are my life.
When my great-grandmother was a young woman, she entered a contest when radio was a primary form of entertainment. The announcer asked her a trivia question to which she didn’t know the answer. When he told her that she had just lost a fabulous prize, she responded that she hadn’t lost anything — it was never hers to begin with.
Much like Great Nana and her radio prize, I don’t indulge in lamenting all that I don’t have — or at least, not for long. Instead, I’m waiting to see what song is played next; waiting to dance and sing along in body, mind, and spirit.
I don’t have the answers for what the future holds. Erik’s question, though valid, is not one I could answer then, nor could I answer with certainty if someone posed it to me now. I wake up each day, committed to doing my best, to moving forward in the direction of my ever-evolving dreams, to being of service — knowing my path may zig when I am planning for it to zag.
Perhaps it is not so much that we build our lives, but that we rebuild them again and again.
This article originally appeared on Role Reboot. Republished here with permission.