Decade after decade, relentless, suffocating illness marches on as we try to manage our struggles so as not to be a burden, so as not to show weakness, so as not to waste the precious time of the parade of often unhelpful doctors we’ve seen. We, the people with chronic pain and exhaustion live quietly behind closed doors while society passes us by. When we are out in the world ever so briefly, we put on a brave face and smile so that we really don’t look all that sick. Among ourselves when we share our despair and fears in our online support groups, we sometimes show our real face secure in the knowledge that we are understood and embraced.
A great number of patients, myself included, have seen close relationships end since coming down with a debilitating chronic illness. When family members and friends don’t believe that we are seriously ill or they decide that they don’t want us in their life anymore, we are faced with a grief that may take years to process. The sorrow remains and rears its ugly head, especially on high pain days when we feel vulnerable.
This being said, I feel that the lack of understanding of our plight by the public at large and by the medical community cannot rest solely on the shoulders of others. Each of us has a fair measure of responsibility for our life circumstances. This is not to say that we are at fault. Responsibility and guilt are two very different concepts.
It is when the illness is at its worse that I tend to let guilt tighten my gut and my heart. My mind asks: What could I have done differently? What if I had said this, maybe this person would still be my friend. What if I had forgiven my mother sooner, maybe I wouldn’t be sick? Maybe if, if, if,….? There are so many crossroads in one’s life that we could spend the rest of our time on earth trying to figure where we went wrong! But here’s the good news: There is no wrong turn. Whatever choice I have made in my life was the right one. It was the best I knew to make at the time and the path it led to was my path, the one I needed to travel. Where I am right now is exactly where I am supposed to be! This is universal Law.
As I allow that thought to sink in, I see that I can let go of my dissatisfaction toward my life situation and the guilt associated with it. I can take a few deep breaths and observe my path from the perspective of the traveler who has gone a long way on the road of life, learning through experience, growing and ever more certain of her purpose.
Now you may ask if there could possibly be a purpose to being ill for so long. Perhaps it has to do with taking responsibility for how we feel about our situation, about how others treat us or about a number of things over which we have no control. I know, it’s a big one. And it all comes back to a teaching I like to fall back on: The present moment. It is only in the NOW that we can find peace, that we can find who we are, and yes, even our purpose. There really IS no time like the present.
Whenever I feel victimized by another person’s behavior, I am in the past. When I am afraid of what is to become of me as I age with this illness, I am in the future. No anguish can exist in the present moment unless there is an actual life-threatening emergency; and when it’s over, it’s over. Another now follows, and another, and so on. Our life path is a series of steps, a series of now.
Taking responsibility for my life means I choose to assess my life situation without judgment or attributing blame. It is what it is. It is quite a relief to let go of frustration and anger when I realize that what is happening to me is nobody’s fault! No one got up this morning and thought: “Let’s see, how can I make Marianne’s life miserable”… The world really doesn’t work that way.
I’ve met people online with ME/FM and other serious chronic illnesses who have found simple, creative ways to maintain focus on the delights of the present moment in the middle of tremendous adversity. One very ill and disabled lady has made it her purpose to send personal, cheerful messages to hundreds of her contacts who are going through emotionally challenging difficulties; everyday, she sends hope, support and love to many who may feel forgotten. Another woman (also very ill and battling homelessness) relentlessly forges onward as her friends follow her journey and pray for her safety. She openly shares her terrible loneliness, and the next day she describes in vivid detail the breathtaking beauty of an autumn sunset in the forest. The following morning we can almost feel the comfort of that warm space she has worked so hard to make for herself as she savors the moment with a photo of her hand wrapped around a mug of hot coco.
These are just two of the many people who inspire me as I also travel a path that is of my making and that I can transform one step at a time.
Each of us is here to grow through experience and to learn life lessons. The universe provides us with needed opportunities. The rest is up to us.
See you where all paths become One,