Those of us living with Kennedy’s Disease often find ourselves “wishing, and hoping, and praying” for a treatment or cure for this condition. I feel this process is healthy as long as it doesn’t become an obsession.
There is another emotion not as healthy, however. FEAR … of what is happening … of what will happen … of what I will become … of what I am doing to my loved one. Fear of the unknown is something most of us experience at some time. It can be paralyzing. It can also cause other health issues and be destructive to relationships.
Yet, when you really look at the actual fear, it is usually based on ‘worst case’ assumptions and scenarios.
I have mentioned several times in this blog how fortunate we are to have Kennedy’s Disease (SBMA) when compared to many other incurable conditions. “Fortunate!” Are you asking if I am crazy about now? Yes, perhaps I am, but that is beside the point. What I mean about being fortunate is “the progression is slow.” The snail’s pace of the progression allows us to accept and adapt. The progression is so slow at times, it can feel like it stopped.
No matter how hard we try, there are times that the fear of ‘what is’ and ‘what will’ penetrates our rational mind. It usually surfaces when we are experiencing a new symptom–something we had escaped until this moment. The fear drives a wedge into our comfort zone; tearing at the delicate membrane of ‘acceptance’ that we so cherish and need.
We were comfortable not having to consider ‘what next’, but now the question explodes into our consciousness. “WHAT NEXT!”
The truth is that we don’t know what is going to happen next. To speculate is unproductive and unhealthy. There is only ‘what is’. Before we can move on, however, we need to accept and adapt to the current change in our condition. I don’t believe suppressing the fear works. I believe you need to face it, analyze it, and break it down into facts and truths before you can rid yourself of the speculation of ‘what is to come’.
For me, it helps to close my eyes and take slow deep breaths (abdominal breathing). When I am relaxed, I smile. Things never seem quite as bad after I smile. When my thoughts turn toward the unknown, or what might happen tomorrow or in the future, I take another slow deep breath and ask, “What is happening right now?” There is something calming about this practice.
That doesn’t mean you shouldn’t plan for the future. Preparedness is good. Most of us are good problem solvers, so when I ask, “If this happens, then how do I continue to be safe, loving, productive, mobile and functioning,” I address a potential need in my life.
Now, before you disregard everything I wrote today, close your eyes, take a slow deep breath …and smile. I am.