Not a day goes by that I don’t think about my health. I have spent almost half my life living with chronic illness. Prior to becoming diagnosed with an aggressive autoimmune disorder and heart condition as a girl, I had been an Olympic level swimmer. After being diagnosed, I was forced to attend school at home and was unable to swim for years. Chronic illness had robbed me of wellness, robbed me of my youth, robbed me of my power. However, desperate to survive, I have refused to give into the overwhelming pull to surrender my passion for living.
After my initial health flare I was bed-bound and was forced to rebuild my strength up one day at a time. I pushed until I was able to attend school part time and swim a light schedule. With resolve of spirit, I grew in strength and adapted until I was able to earn a scholarship to swim in college. The experience propelled me to earn the title of National Champion and eventually I graduated with a fine arts degree from one of the top art and design schools in America. I had accomplished what I once was told was impossible.
Despite having been tested in strength and spirit as a young woman, nothing prepared me for the test that I would face years later as a wife, and a new mother. It has been almost 15 years since I was first diagnosed, yet I was reeling from trying to manage my conditions within my new roles. I envied other wives who accomplished countless tasks during the day and welcomed their husbands home with hot delicious meals. I envied the moms who were unfamiliar with the fear of losing consciousness due to cardiac dysautonomia while pregnant and endangering their high risk pregnancy. I envied the moms taking their kids to the park and the zoo without a second thought.
My condition had categorized me as permanently disabled from the time I was barely a teenager. It affected every part of my body, and it had begun to affect my mind. I was mourning for the health and body that I would never have. I was tired of the pain, the nerve damage, the brain fog, the crushing fatigue. I was tired of the constant stream of medical visits and appointments. I was tired of taking fistfulls of medication to just survive. I was tired of “looking fine” on the outside while a war was raging within. I felt trapped in a cage. I stopped caring for my condition and soon I had let the strength that I had worked so hard to build in my body deteriorate. I knew I was letting my disease overtake me.
My biggest dream has been to be a wife and mother. The guilt that I felt for being unable to be the perfect woman I envisioned was crushing me. The stress my family was feeling while trying to care for me while supporting my husband’s military service was a strain on our happiness. Our family’s future was slipping away, I knew something had to be done. I had allowed myself to resist my situation which was leaving me unable to cope. In order to thrive for myself and family, I was going to have to embrace my reality.
I remember when my husband brought my wheelchair into the house for the first time. My medical team had decided that due to my deterioration of health, it would be best for me to regain my strength with adaptation. At first I felt trapped- but then something beautiful happened. For months I had been refined to my home, yet for the first time in a long time, I was able to get outside with my children.
I have since graduated to being able to use a cane for extended periods of exertion, and to even be mobility aid free for short periods. I began to see that while I will never be “normal,” it is still possible to live a life of beauty and experience. By prioritizing my health, I have found a way around my limitations. I am able to inspire resiliency in myself and my family. My condition no longer defines me thanks to implementing grace and understanding for the body which has created life itself. I choose to see a brave heart wife and mother, formed into iron by adversity. I choose life without perfection, life without apology, life without judgement. I choose to embrace the hand I was dealt without hesitation. I choose a life lived!