Monday was a day set aside to reflect on personal sacrifice, dedication to values, making commitments to those we share our lives with and things to believe in. It was a day when we said “Thank You” to all those who have, and continue to be, on the frontlines for us all.
As I prepped my dedication to my grandfathers who took their place in WWII, one sent against his will to the Russian front by Hitler and the other who willingly left his home here to fight against all that Hitler stood for, I also sent my thanks to the many people I have had the opportunity to talk to these last five months.
I have been pretty absent from the blog here, my Twitter and Facebook accounts, the newsletters and blog carnivals I usually write for, the book discussion group and other social networking groups I belong to. I feel bad about losing touch with the many wonderful people I’ve grown to love hearing from. However, I knew this January that it was time to get out here locally to do much more person-to-person outreach work in order to learn as much as I can about all of you living here in Oregon and SW Washington. I know I’ll be back online to catch up with my friends eventually, but I also know that there is only so much time and energy I have to work with. Right now, it’s time to get out into the local trenches and begin getting a clearer picture of what our health battlefield really looks like here.
Over these past months, I have had conversations with individuals who live with illnesses of many types and have heard the same words used by them as I have heard referring to this weekend of remembrance:
“I have lost someone dear to me who fought as hard as they could against lupus.”
“I walked into that appointment as one person and came out of it as someone else.”
The symptoms change all the time and I never know when they’re going to hit!”
“The problem is, it’s like living with an invisible enemy that only I can see.”
Monday also marked the end of Lupus Awareness Month, which I was pretty absent from participating in this year, too. Some of it was in response to the lack of entries to our awareness event this year. Last year’s event was amazing, while this year’s fell on deaf ears—even the ears of my closest health blogging friends. In fact, it appears that many fellow health comrades have been MIA right along with me. Or, dare I say, outright deserters? If we have a choice to step out onto the battlefield or pursue different paths that bring ourselves peace and joy, why would we choose battle?
There are some strong similarities between war and illness, which is why you will often hear military speak used in health publications and public awareness campaigns. There is something admirable about making it through formidable health scares and wearing our ordeals like badges of honor. For those of us who see ourselves as lupus veterans, we wish to tell our stories because getting through it all truly pushed ourselves into situations we never knew we could possibly survive. And, again as war veterans do, we sometimes have to deal with the questions and judgments from those who believe that our stories glorify something ugly and unnecessary. The judgments are harsher for those who either willingly sign up to defend or for those who seem to have brought on their health challenges through poor choices or habits.
When one is drafted into a war that we don’t understand or drafted into health challenges we don’t understand, experiencing those barriers put up by others is difficult to take and quite painful emotionally.
When we are put into situations that are as harsh and sometimes brutally real as both war and illness can be, being able to speak openly about our experiences are more about our own survival. Getting through things we never thought we would get through gives us those badges of honor. We need to acknowledge those hardships, because they become concrete parts of our identity and never truly leave us once they are within us. We all have different levels of tolerance and the capacity to get through a scary experience varies from one person to another. When we have had particularly traumatic experiences, the need to work through them emotionally does require using our voices to release the thoughts, fears and hurt we go through. We need supportive reassurance to help us understand that we have either done or been through things that we truly didn’t deserve. For those who seem to deliberately walk into harms way, there are belief and value systems that are so deeply embedded into who we become that choice isn’t really what happens within us at all. It’s simply acting upon what we know and feel to be true.
In any event, judgments serve no purpose in supporting each other through the ugliness that life can often put us through.
I have come to appreciate even more how important just listening to someone’s experiences offers so much insight. Not just about the person telling the story, but who I am and how their experience does apply to my life as well. Even without going through their battle or seeing their viewpoint from where we stand, we never know what we are capable of until we have to be there or make those difficult decisions. In fact, choosing not to make the difficult decisions can cause even more pain for ourselves and others. For those of us fortunate to not having to see ugliness firsthand, we forget how much we benefit from those who do. We learn from them that we need to work harder in preventing those situations that do so much harm. We learn that it takes a great toll on those who have to carry that ugliness and loss around within them. It also teaches us that we all share one experience—the human one—and it requires finding hope within every experience to keep us all going.
Thank you to all the wonderful ladies who have spoken with me these past weeks. Thank you, veterans of all types of wars, who did what so many of us didn’t have to or couldn’t bring ourselves to do. I recognize the prices you have had to pay so that I might learn.
I honor your courage.
