My Story
After much hesitation and thought, I decided to share my story. As humans, we have a fundamental need to be seen and heard. So even if the acknowledgment of pain comes only from ourselves, it somehow allows us to move forward. For years, I only told a select few about what was going on. I was afraid that my illness was all that they would see. But hiding my true self took energy, so I decided to take off the mask. I have lived with illness most of my life but managed to live a pretty “normal” life up until about twenty years ago. As a child and teenager, I was sick with more than my share of upper respiratory infections and sinus infections, and I sometimes ended up in bed for at least a week. I missed school and lots of social events. If I went to a slumber party or stayed out too late, I would surely get sick. My parents and my doctor knew that this wasn’t typical. I didn’t look sick most of the time, and no one could find a cause for my frequent sickness. I lived on antibiotics and kept going. I finished college, started teaching, earned a master’s degree, married, started a doctoral program, and had two kids. Whew! Seems pretty normal. I was living the life of my dreams but still getting sick.
About 20 years ago my energy began quietly and steadily seeping out of me like air from a pin-pricked tire. I always struggled to keep pace with my friends, but this was different. It was the kind of leak that goes unnoticed until a flat leaves you stranded. After lots of misdiagnoses and ever-evolving symptoms, I was diagnosed with a rare autoimmune disease – autoimmune polyglandular syndrome type 2. In addition, a few years later, in my late forties, I was diagnosed with an aggressive form of psoriatic arthritis.
Eventually, the autoimmune diseases took their toll on my body. I have had many surgeries, including two spinal fusions, take medicine five-seven times a day, give myself injections at least once a week, and have constant pain from the orthopedic complications of my conditions. I usually don’t go a year without at least one hospital stay. I don’t relate this list to get sympathy. I do it because you need to know where I have been to better understand my journey and hopefully set off on your own. My health problems converged to make my life different than I ever thought it would be. I was an educator for 25 years until my illnesses made it impossible to continue teaching. At about the same time, my younger daughter went off to college. I felt that I had lost the life I had always imagined I’d have. I struggled with who I was without those defining roles. Ancient Greeks believed that the River Sticks separated the living and the dead. After crossing the river, a soul was reborn into another body waiting on the other side. The River Styx flows through each person’s life, sometimes building a rich, fertile delta, other times depositing silt in such a way that a dam forms and cuts us off from our true selves leaving us on dry, barren land. The choice was mine to make as to how I would be reborn into this new body.
Life has a way of shaking us awake if we let it. We set paths for ourselves in terms of work, social, and personal goals. This is a necessary step for survival and, to a certain extent, happiness. However, sometimes we become so focused on where we are going that we fail to recognize opportunities for transformation. If we are certain that we have only one path, we risk missing the wake-up calls that come with adversity and open the door to new life. Adversity can be the latent energy that fuels our growth. I had a choice to make about how I was going to live. I could fall into the abyss of my chronic pain and illness or live a life of joy. I chose joy. I don’t mean living in a state of everything is wonderful, but in a state of everything is. This lets me know that I am not alone in experiencing challenges in life. Difficulty will come for all of us. What’s important is how we choose to let it change us – because it will change us. We must be able to reframe the picture and widen the lens beyond our own suffering, for it is there that we find joy. There, we see the small, kind gestures of our loved ones, sigh at the majesty of a sunset, or feel the soft fur of a pet. It’s a daily choice that comes with lots of practice. I want to share what I have learned, continue to find ways to nurture my mind, body, and spirit, and listen to your stories. Together, we can support each other on our journeys to navigate the challenges of living with a chronic condition.
