Words can be powerful. They can be thought-provoking, encouraging, and inspiring. They can also be mean-spirited, unfeeling and demeaning. We must always be careful what we say and to whom we say them. No matter what we are going through at any given time, our words should always be spoken with love , caring and understanding. We need to realize that everyone we meet is experiencing a battle we know nothing about………..
That being said, we need to realize no matter what we say, our words always remain open to interpretation by the people reading or hearing them. Suffering with Sarcoidosis has made me a different person. I do not like mostly who it has made me and no matter how hard I try, the person I am now is something I continually struggle to accept. Still there are times of clarity, usually when I am alone in nature experiencing the beauty God has created, that I find a peace, fleeting or not, where everything is again right with the world.
Trying to accept this disease I think has forced me, in a way, to try to make a lasting peace with it. In that, I feel the need to define it for what it is for me. A while back I wrote a blog here called “My Chains are Gone.” I used the phrase “my new normal” as that very definition. If I could just settle into that new normal, maybe, just maybe, I could accept it. So, I accepted that as my definition and moved on.
Recently I read a post from a fellow Sarcoidosis sufferer taking a completely opposite stance on the term. She labeled the phrase, among other things, as stupid. Initially I was offended by her words. In fact, I was a bit angry with her disparaging the definition that I had found such peace in. Staying true to who I am as a person, I confronted her KINDLY about her use of words. It was through her explanation that I came to realize she was right. I actually agreed with her. I can attest to the fact that that phrase is indeed, Stupid!
There is nothing NORMAL about this disease and the way we each experience it. Is it normal to live in chronic pain day-to-day? Is it normal to be out of breath and have your heart racing after climbing a flight of stairs? Is it normal to forget things mid sentence and not be able to find the right words to articulate a thought? It is normal to get so fatigued you can sleep 15 hours and still require more sleep? The answer is a resounding NO. There is NOTHING normal about Sarcoidosis, period.
So again, at the end of the day when everything I’ve tried to make sense of makes no sense, where do I turn? It all comes down to me. Am I going to run and hide and just let things happen to me? Am I going to just let my disease win? Or am I going to dig deep down inside , draw strength from the Lord and say I will live another day? I will live to fight. I will define once again what this illness is knowing that yes I AM stronger than my illness and this is definitely “Not my new normal!!!”