Dec 06, 2017 • Written by Rachel Boulos
The Broken Road: My Journey with Disease
It started out as a normal summer day and we couldn’t have been more thrilled. Hubs and I had just purchased our very first home. And it was yellow. I had prayed for yellow. Moving day was set, our boxes packed. We were moving right along with our list of goals: New house, check. Jobs, check. Furniture, check. Search for a dog, check. Our future was looking bright.
And then it happened. Something didn’t feel quite right. My energy started to fail and I found myself getting easily fatigued. Over the next few weeks my knees began to swell until they became the size of cantaloupes. As the swelling increased, the pain grew. It hurt to walk, it hurt to stand, it hurt to move.
I spent my 30th birthday and a good part of that year battling a crippling disease. Instead of gracefully waltzing into a new decade, I hobbled my way through. Within two weeks of our move I became confined to our couch, utterly fatigued without even enough energy to make myself a sandwich. Even hobbling across the floor to the bathroom became a tremendous feat. My body was rapidly breaking down before my very eyes and there was nothing I could do about it.
Severe fatigue, weight loss, deficient memory, insomnia, night sweats, and inflammation took control of my life. Within two weeks I lost 25 pounds and in less than a month my ability to walk was impaired. I found myself forced to use wheelchairs and motorized carts, shame and embarrassment filling me as I hid my gaze from other shoppers. I visited doctors from ten different departments and had more tests and blood drawn than I ever thought possible, yet answers continued to escape us. My test results were normal, leaving us even more perplexed. This was anything but normal.
And so I sat. Daily. On my couch. Gazing out the window watching people breeze by with their strollers and dogs, wishing with all my heart I could join them. My world had been completely turned upside down without a reason why or a promise that it would get better.
Disappointment came, followed by insurmountable heartache and grief over what was being lost: hopes, dreams, expectations on how life would be. Fear crashed over me in powerful waves, each one with a new unanswered question that threatened to pull me under. Why God? Don’t You see? Do You care? Why won’t You answer our prayers? Why won’t You heal me? Will this ever end?
God seemed silent. But He was still moving.
These moments of unanswered questions and endless prayers became my watershed, my turning point in life. In the midst of my confusion, grief, and disappointment, something new was emerging. God was using my physical suffering to reveal the condition of my heart and soul. My doubts, insecurities, and fears were being exposed as my life was falling apart. Did I really trust God to take care of me? Could I really depend on Him to provide what I needed? I knew He could heal me, but could I keep my faith even if He chose not to? Do I still believe God is good and loving even when He doesn’t step in to relieve my suffering? These questions haunted me. My answers to these questions were not only vitally important to my ability to survive this, but my trajectory of life and who I became depended on it.
After months of unanswered questions, a trip to Mayo Clinic finally revealed that I had an autoimmune disease. Autoimmune, where your body and tissues are attacked by your own immune system. To this day, there are over 80 autoimmune diseases and the cause still remains unknown. And where there is no known cause, there can be no cure. Medicine’s best offer? A potentially lifelong biologic drug to suppress my immune system and mask my symptoms in order to give me a more functional quality of life.
I’ll be honest. This felt more like a life sentence and less like good news. I burst into tears as soon as we left the office. I felt hopeless. I felt broken. I could no longer rely on my body to do its job. It had turned on me. And there was no way to fix it. Like humpty dumpty, they couldn’t put me back together again.
Today I am learning a new normal, a new way of living with disease. I am incredibly grateful for the miracle of modern medicine, as it has subdued my symptoms enabling me to freely walk once more. But everything comes with a price. I now live with the very real increased risk of cancer, infections, and threat of hospitalization during cold/flu season. Our dreams for a family, once assumed with certainty, is currently not an available option for us. Yet we continue to hold onto our hope with an open palm.
Instead of a dull roar, my disease has become a quiet hum in the background of the day to day. I may look fine on the outside, but inside I am fighting everyday for my quality of life.Energy and effort is spent on optimizing my health in ways that are within my control. I continue to suffer from gastrointestinal pain on an almost daily basis, and my diet regularly goes through a roller coaster of change as I experiment and seek to understand its effect on my overall health. And I live with the knowledge that at any given moment my body could choose to resist the drug keeping me in limbo and hurl me back into the inflammation cascade.
My journey with disease has taught me a number of things along the road. It serves as a good reminder that our bodies are not invincible and that the choices we make today actually do affect our tomorrow. I am reminded when I wake up in the morning that each day is truly a gift, and that sharing it with those I love is the greatest blessing. Remembering to cherish the little moments and make them count helps provide perspective. It is by no means easy, but no one ever promised it would be. In moments of confusion, darkness, and pain, I can find renewed sense of strength and hope. I may not have assurances, but I can have peace. God is still in control and has a plan, even if we don’t understand it. He is good, He can be trusted, and He will not abandon me even if He does not fix my situation or restore my health as it once was.