I have been pondering of late this sense of isolation that seems to go with hidden disabilities. I have to acknowledge that some of it is my responsibility. In order to move toward change we have to acknowledge our piece and deal with it. We also need to share with others ways they can help us. But one without the other is not likely to be effective.
So my piece. The reality is that sometimes engaging in the “normal” or “typical” things in others’ lives just screams at me how not typical our life is. (Note, I DO recognize that “atypical” would be the proper word there but somehow it doesn’t feel as emphatic. Go figure.) Sometimes I can manage this and be o.k. and I participate. Sometimes it is so painful as to be almost unbearable. In those moments, I tend to not engage. Is that the fault of others? Of course not. They are living their lives, celebrating their moments. I want to celebrate with them. How do I do that through my own ongoing grief…? Not sure of the answer to that one. And in those moments I feel like some of them are thinking that I just need to get over any grief and deal with it…. The challenge, of course, is that the grief is not an event in time to “get over.” It is an ongoing death upon death that is hard to explain unless you are living that kind of life also.
It isn’t even something I can wrap words around. I am sitting here weeping as I type. It just is. It just is what it is.
Perhaps the day will come when those moments will not be so raw. If so, I have not grown that much yet. I am often not able to be there. I want to be but I don’t know how.
Honestly that distresses me. But I don’t know how to change it. I take life as it comes and try to process as I go. I am not typically one who holds on to past offenses (real or perceived). I typically process and talk through as I go.
There are moments, however, when the processing is so beyond painful that I can’t do it with others. Perhaps if I did they would understand more of our journey. In that way, I suppose I may keep them from understanding. Perhaps that is part of why this journey feels lonely at times. It isn’t that people aren’t trying to understand. Sometimes they really are. But they don’t understand. And some of that responsibility may lie at my feet. Because the most painful moments are borne alone or with our family… not shared. Not borne publically.
So I am ponderous today. How do we make things better in this area? Is it possible for it to be better? Or is this just part of the hidden disability journey? I would welcome your thoughts.
Moving toward the goal of true maturity,