Dealing With The Desolation Of Progressive Illness

I have had so many individuals question how I deal with the undeviating desolation of a progressive, and fatal illness. When bad news seems to be a constant in my life how have I not fallen into a deep, unfathomable depression. I have thought long and hard on this topic and found that the answer may have even surprised myself slightly. What I had attributed to "always staying positive" during the turmoil that is my daily existence, turned out to be almost the exact opposite. I found that I had the ability to keep my bubbly and lightheaded demeanor simply by not anticipating anything positive at all. In a nutshell, I always expect the worst and keep my expectations low. While that sounds like a heartbreaking way to live, the truth is when battling a disease like Systemic Scleroderma there truly isn't many other options. Before jumping to the conclusion that I am a pessimistic, morose individual, let me explain my reasoning:

When navigating the devastation of a degenerative illness you become familiar with phrases your loved ones, or even complete strangers may send your way. For me the terms I most received were idioms such as "Dream. Believe. Achieve.," "Always Stay Positive," and "The Best Is Yet To Come." While these expressions come with good intent, I found none of them helpful in my situation; I could not simply believe my illness away. No matter how hard I dreamed of a functioning body, no matter how positive I stayed I achieved nothing but further progression of my disease. The company around me encouraged me to stay positive and have confidence that I would receive good news from my next round of testing, so each time I was presented with poor results I was devastated. Each deficient medical result was another blow that took weeks to recover from. With this forced sunny disposition on an illness that is anything but, life seemed so bleak; constantly receiving information about the deterioration of my health when I was hoping for the exact opposite took a serious toll on my mental stability over time. I could no longer live like that -- It was time for a change.

I had, had enough of this "Dream. Believe, Achieve," perspective, it was unrealistic, and frankly counterproductive of an illness that a skilled physician had already expressed would take my life. Why would I stay positive for suitable test results when I knew they were not going to come? Why would I put myself through the torture of constant let downs? Why would I submit myself to the torment of persistent disappointment? Instead, I decided from that moment on I would prepare myself for the reality of my illness, and acknowledge the desolation it would wreak in my life. I told myself then and there that I was no longer going to hide from my reality but embrace the life style that had been thrust upon me. No longer would I cower in fear of unpleasant results or the progression of my fatal illness. I would meet these results, and new challenges head on!

While may people around me depicted this mindset as "pessimistic" I utterly disagreed. I believed wholeheartedly that my view was one of acceptance, realism, and endurance; what I liked to call "a realistic optimistic perspective." With this new outlook in place each of those negative test results, or new symptoms that developed did not knock me back for quite as long. I felt composed, calm, and prepared; I knew these results were coming and I was not surprised. I still felt the tinge of disappointment, but no longer the devastation and horrendous sadness that used to accompany my results. While yes, some days tears still flowed down my cheeks, my recovery was easier. With the full acceptance of my illness I was able to find more joy in my life and celebrate the small victories that manifested themselves; no longer in a constant state of mourning over my deteriorating health, happiness become easier to find.

I am in no way stating patients should halt their belief in miracles, or that they should abandon their hope. I myself believe strongly in the power of miracles, however, I will not put my life on hold for something that may not manifest itself in my lifetime. I plan on focusing on the now, and being ready for combat at any moment. I will fight this disease with every fiber of my being, and to do that I must be prepared; I will not be caught underestimating my enemy. I would much rather be prepared for the wreckage than live in fear of it.

I am sure this post will raise questions about my faith. If you are interested in my testimony of the Lord Jesus Christ and His hand in my life please click this link to a previous post: A Note To My Readers and read #2. I have found that many individuals state blindly, "you can be healed if you just ask." Please read through that post thoroughly before you comment on this posts, or any others with responses such as that. I have a strong testimony in my Savior and his healing powers but, His will is what governs my life, not my own.