In spite of having a file of posts stacked up like planes above O’Hare, there was a notable silence around these parts last week.
I awoke Friday morning, retreated to my recliner with it’s comforting heat and massage as is my ritual, to find this article waiting to fill my world with sunshine.
Six hours later I was on a train with my eldest son bound for Washington D.C., with visions of pot-stirring dancing in my head.
Turns out you can’t really do any of that in our Nation’s Capital anymore.
Huh.
Thanks to Organizing for America I managed to connect with some wonderful and highly motivated individuals kicking insurance reform rear. Not sure I did anything terribly noteworthy, certainly not anything I couldn’t have done at home. But I felt strongly that I needed to be here in the middle of things to make a difference.
I’ll be heading home soon, not nearly as triumphant as when I arrived, but sure in the knowledge that however ill-advised my trip may have been, I’ve lived my ethics to the best of my abilities, and can lay my head on the pillow each night with a clear conscience.
Today I’m taking a break from my efforts, and also trying to recover a bit. In reading some of my fellow chronic disease bloggers, I came across this post which hit home for me, since the rage and fury only blocks the awareness of pain for so long, particularly when one (who should know better) takes advantage of that false sense of security by pushing themselves too far. Particularly when one filled with all that sturm und drang leaves behind their pain medication.
Oops.
This is perhaps the cruelest aspect of chronic disease/chronic pain.
People see what you do, not what you can’t do, since that is mostly an internal struggle. So they see that you shop for groceries, or clothes, or go to church, or volunteer, and they don’t have any real understanding of the other side of that coin, the days, weeks, months you are incapacitated, the activities already banished from your calendar forever, the people you’ve let down, those who couldn’t handle the price to be paid for chronic disease. After all, who can blame them? If I could leave this all behind, I would too. It’s a luxury I don’t have, so I have all the more compassion for those who can, and do. Nobody would chose this.
Even your closest loved ones, when they’re feeling tired, put upon, and weary will forget the cost to pushing yourself too far. Chronic disease is really pushing the envelope on the old “in sickness and in health” meter.
For that matter, my little junket here proves I myself can delude my way into thinking I can still contribute just like the rest of the world. As Randy Pausch reportedly said, even the injured lion still wants to roar.
Which is not to say I don’t have something to add, some way to be effective, but it’s important to remember, I can’t do it the way I used to. This is both a cause for consternation, but also an opportunity, a chance to learn new ways of giving back.
I wish, for the sake of our loved ones if not for ourselves that society could be a bit more supportive and accepting of the needs of people with chronic diseases. I’m just not sure how we can make that happen here, in this country of sprinters. We’re a culture of hares, and those of us with chronic diseases are like the proverbial tortoise, with an arthritic leg that acts up on humid days.
I look around my community of fighters, and see such impressive courage, strength, gumption…. I wonder what we miss by not working harder to bring these people into the mainstream of American life.
I suppose I’ll have plenty of time to contemplate on the long ride home.
