I have had so many individuals question how I deal with the undeviating devastation 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 about 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 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 you’re dealing with a disease like systemic scleroderma, there truly aren’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, 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 and no matter how positive I stayed, my test results always presented 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 about 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 since a skilled physician had already expressed that this illness would take my life. Why would I stay positive for suitable test results when I knew they weren’t 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 lifestyle 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 many 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 didn’t knock me back for quite as long. I felt composed, calm and prepared; I knew these results were coming and I wasn’t surprised. I still felt the tinge of disappointment, but no longer the devastation and horrendous sadness that used to accompany my results. While there were still some days that tears 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 became 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 would much rather be prepared for the wreckage than live in fear of it.
Follow this journey on A Day in the Life of a Tube Fed Wife.