Living with chronic illness is an extremely isolating phenomenon. At times. It can also be spirtually empowering…at times. Drawing from the gut. And the soul. But, rebuilding in the wake of it’s realization eventually begins to feel less like Rebuilding, and more like Functioning. More like Survival, and less ‘getting back on track’. Maintaining, rather than shooting for the proverbial moon anymore. But, the good found here lies in your most basal presence. You, in barest form. When all else has been stripped away, everything we know of ourselves, down to the studs…you see and speak with the raw version of yourself. Head on. No airs. No pretense. No false pride. No cover of self talk and lifelong internal scripts or preconception. No walls. No hiding. No bullshit. It is nothing short of a blessing to be challenged in the unflinching manner of this depth.
Your worries and fears still exist. Maybe more now, and maybe less. Simply changed perhaps. We all have them. Only now they are seen tuned through a deeper filter. Sharper and highly discerning. The rubric of importance of those worries and fears has shifted. Forcibly taking an alternate position somewhere on the scale. Every decision, every move, every word, every moment…every breath. Our energy that much more precious. The Present is even more valuable a commodity, if that could be imagined.
We are taught young to impress. To gather. Things and friends. Admiration. Success. The bigger the circle, the more “important” and valuable the person. It’s what we see and it’s what is societally perpetuated. We are taught to celebrate fanfare for fanfare’s sake. And confidence ostentatiously misdirected into arrogance. We root for those most rooted for. This same society that teaches us we are selfish if we draw our scope of vision away from fanfare, and narrow it inward towards concern for ourselves. Our family unit. Our children. “Well, others have it way worse than you”. Indeed they do. “You are not more important than anyone else”. Indeed I am not. This I know. But it is through the latter stark axiom that we learn to keep quiet especially about our physical pain and struggle, lest we be accused of attention seeking…or being a ‘downer’. We learn we are Best when not focusing on ourselves. It really is no wonder there are so many wearing a false face, leaving true healing, physical or otherwise, an impossibility. And suffering silently so that no one else is uncomfortable. So no one rolls their eyes or has something sarcastic to say. So no one disappears. Continue to please and serve the desired purpose and you will be accepted. You will be acknowledged. You will be valued. You will be celebrated. You will be The Same. And all will be well.
But where do we speak when all is not well. How much are we “allowed”. Or is socially acceptable. What happens when you are not The Same. When you can’t pretend you are not hurting. When laughing or talking are now feats of strength. Not just habit. When you can’t force the most perfunctory. When planning takes more time than the plan itself. When each day has to be rewritten before it begins, with a pen at the ready to rewrite that rewrite if need be. When every aspect of your daily reality is altered. When you aren’t dependable…when you feel you aren’t useful. When you can’t count on what you knew, as it seems you can no longer be counted upon. Where do we speak then. Do we.
…We do. Because, there is also a wealth of grace to be found in us through deliverance into the level of humility that comes when our physical privacy and dignity have been sacrificed. When what’s voluntary and involuntary have swapped places and our autonomy of choice is taken, the petty seems to fall away. When we are open about personal darkness, we can find support, support others and stitch up the underlying and often secret cycle of hopelessness. Depression, disability, chronic illness, grief…they are a thief of so much. To so many. We do not need fear of judgment, namecalling or desertion in addition to real pain. We do not need opinion from those who either do not understand the walk, or refuse to see our walk as real to us simply because it does not benefit them.
I am not weak or resigned. I am healing and surviving. I am not attention seeking. I am hurting and not ashamed. I am not selfish. I am a caretaker but that also means myself and my kids. I have lost so much. But I have gained much in it’s place. I am not sad or lonely. I am optimistic and fulfilled in my heart because I have seen what I am capable of, where I truly matter and what brings me joy. I have learned that betraying my personal truths to avoid judgment or sarcasm is betraying acceptance of myself.
I may not be The Same…but my soul remains as it has always been and always will be. Stronger, in many ways, than it once was. And that is the one and only thing in this world that I’ll allow define me.
Be well and speak your truth, Friends