Living with a chronic illness for which there is no cure takes a toll on your mind, body and spirit. After thirteen years of battling Neurosarcoidosis, my will to live was slowly slipping away.
On my 55th birthday, I experienced the most severe relapse since my diagnosis. Initially, I managed to mask the tell-tale signs…loss of appetite, Vertigo and extreme fatigue. I painstakingly hid my fears from my mother, sister and children. My efforts were short-lived when my mother commented on my waning appetite. I saw the fear in her eyes when the pain impacted my mobility. A trip to the emergency room resulted in a diagnosis of possible inflammation in my brain or spine. I was given an IV, antibiotics and instructions to follow up with my primary care physician.
I was wasting away as I struggled to get out of bed a few days later. My mother purchased a full-length mirror so that I could see what she saw. I was afraid to see my reflection. One night after a shower, I mustered up the courage to look in the mirror. I broke down when I didn’t recognize myself. My eyes were sunken into a gaunt face of ashen skin. I looked emaciated as I forced myself to step onto the scale. I gasped when the digital numbers stopped spinning. I had lost thirty-one pounds in seven months.
Father God, am I dying?
Unbeknownst to me, my mother had slipped into her room and called my sister. She whispered that she could not get me out of bed. My sister called and asked if I wanted to go to the emergency room. In that moment, if I could have laid in bed and transitioned peacefully, I would have. I didn’t have any more fight in me. I closed my eyes and thought of my three grandchildren. They need me. I have to be here for them. I want to see them graduate from high school. I dreamily smiled when I thought of them speaking of their first loves. I have to fight!
My mother helped me get dressed as my sister raced over to take me to the emergency room. She broke down as she told the doctor that I was wasting away. I was experiencing a failure to thrive. Failure to thrive is normally a mental state versus physical. It is often the result of prolonged isolation leading the patient to fall into depression and eventually die. After being admitted into the hospital for malnutrition and dehydration we were shocked to learn that my right lung was full of fluid and I had developed a blood clot under my heart. I was devastated as my mother and sister took turns sitting by my bedside as multiple procedures were ordered.
One evening, my sister came in and wheeled me around the nurse’s station. We stopped at a window and marveled at the beauty of the wind rustling through the trees. I knew we had to have the conversation that I could not have with my mother. I thanked her for being the best sister in the world. Although she is seven years younger, she has always been my protector. I confessed to her that I was tired. I didn’t know how much more fight I had in me. I promised to fight until the very end but when I had nothing left, I would let go. She wrapped her arms around me and professed that she could not imagine what I was going through but she would honor my wishes.
During two weeks of hospitalization, my children flew in as I underwent a battery of tests to rule out cancer as well as any other life-threatening diseases. My family prayed over me with baited breath as we awaited the results. Our prayers were answered when the results came back. I am cancer free. I am on a long-term regiment of infusions, similar to chemotherapy, as well as a high dose of steroids to decrease the inflammation in my body. I have a long road to recovery but I am grateful for God’s Grace and Mercy. He is not finished with me yet.