During these very hot days of August, I decided to try something different to keep myself sun-protected, but a bit cooler than when I wear wigs under my broad-brimmed hats. I purchased a long and sheer scarf, folded it into a triangle, tied the two ends together above the middle point, and fashioned a side-knot that, when combined with the hat, looked surprisingly stylish (if I do say so). The other surprising thing about my new “look” was the immediate reaction of others. People I did not know made a point of telling me they liked the scarf/hat combo, and a couple of women confided that they, too, were swelting from wearing wigs and would give my fashion statement a try! Anyone who is chronically ill and has experienced appearance changes will appreciate how encouraging such statements were – and how welcomed! My thanks to all who chimed in; I appreciate the feedback.
There is another kind of feedback, however, that I also experienced recently that was off-putting. Decked out in my sun-protective armor, I was coming out of a store and approaching my car when a strange man followed me and came up to my car with me.
“I see you’re protecting yourself from the sun,” he said.
“Yes,” I replied.”
“Well, do you make sure to get your vitamin D levels checked?”
Compliments are one thing, but discussing my lab tests with a total stranger on the street is quite another! And, I said so, in what was, I hope, a kindly way.
“I’m sorry, but I don’t talk about my health issues with strangers.”
He didn’t seem offended.
“Well, I just had to bring it up…”
Yes, there’s good and bad when strangers feel inclined to opine. On the one hand, it does truly help to get those unexpected remarks from strangers, especially if we’re trying out a new “look.”
But on the other hand, standing in the street to talk about our lab tests, or being told we should be doing something different (which has also happened to me more than once) is truly inappropriate. And please, to those who do this, don’t take offense if we who are in the proverbial trenches decline to engage in the conversation!
f you have just been diagnosed with a serious chronic illness, or if you have been living with one for a long time, I just want to take time out to just say something, sister-to-sister: Please do not be angry with yourself if you find that you simply cannot do it all, like you think you used to be able to do! Instead, take good care – of yourself and your loved ones. Be kind to yourself, and let your Spirit catch those tears and transform them into comfort and calm as you rest more each day in God’s love and support.
Why do I write this?
Because I often heard, before and after lupus, that “women should be able to do it all,” or “as a woman, there’s no reason why you can’t have it all.” Usually, the “all” referred to having a career, satisfying relationships, children, a home, and probably even a small business venture on the side. But in life, rarely is it possible to “have it all” or “do it all” to the satisfaction of everyone and each endeavor. And, when you have a chronic illness, well, all “alls” are often even farther out of reach.
Having an illness brings more stress to a life that’s probably already laden with it. And having an illness brings to our bodies and hearts a vulnerability that is extermely sensitive to the onslaught of doctors, meds, tests, flares, and changes in appearance and abilities. Instead of striving (and straining) for “doing/having it all,” we often have trouble just getting the basics done without feeling fatigued or, at the extreme end of it, wiped out. I have witnessed many woman become even more ill when they try to merely add a chronic illness on top of the myriad other responsibilities that they already have. And I’ve witnessed this, and the frustration and disappointment, in my own life, too.
Yes, we fight against the illnesses that constrain us. Yes, we have deep dreams and things we would like to accomplish. But within these emotions, goals, dreams and realities, we have precious lives, we love precious people, and we serve a wonderful God!
Sister, we do not have to “do it all,” as our society would so frequently encourage or dictate. But that which we do, with our God-given treasure of talents, energy, and love, that, yes, that, will be enough.
Joy and peace,
The clouds in the sky. A flash of lightning. A baby’s giggle. A “common” cold.
When you see or hear these things, do you disect them scientifically? Or, do you wonder?
What are the things in your life that you try to analyze?
What are the things that you lift up to God, pondering whether or what the meaning of it all might be?
Although we life in a time and with health conditions that can often be at least partically explained in terms of genes and cells and chemical reactions, there is still much in life that cannot be scientifically explained. Lupus, for example, still defies exact description, although some might say, erroneously, that they have it all figured out!
With much still unexplained, instead of fretting over, “When will they know?” or “Will I live long enough to see a cure?” I prefer to go to the Source of it all. I prefer to lift my wondering eyes up to God. In doing so, I find any stress over “no cure yet” evaporates, and in its place is the knowledge and comfort that, no matter what might be in the future, I, body and soul, will be all right because I’m in God’s hands.
I also lift the same kind of wonder and appreciation up when I see that jagged flash of light, or take time to feel the breeze on my face. I don’t have to know the currents and the chemicals, the reactions and the equations. I merely appreciate the nature around me – and that is enough. And, I try, too, not to insist on “figuring out” my friends and family, but just rest in their presence and enjoy and love them for who they are.
If we insist on scientifically disecting everything in our world and lives, we run the risk of missing the point of them, the majesty, the beauty, and our own place, which is to appreciate, give thanks, and care about and for the unfolding wonders.
Yes, it matters if we wonder! If we don’t, we’re truly missing out!
Searing. Exhausting. Oppressive.
These and other words are often used to describe the high heat of the summertime. And they’re also words that we use to describe pain, especially the kind of pain that is chronic and unrelenting.
This summer has been a very tough one for high temperatures and chronic pain, and one of the things that I’ve been trying to do to “cool off” is return a bit to my childhood, especially the fond memories I have of escaping the heat (we didn’t have air conditioning when I was growing up) by cocooning in the local library and devouring book after book. How I loved going to all those interesting places, meeting amazing characters, and diving into stories woven in different times! No “hard-hitting” novels, then, but rather “juvenile” fiction – the Narnia Chronicles by C.S. Lewis, the Wizard of Oz books, Misty of Chincoteague and the other “horsey” novels. I just last week finished reading my first “Freddy the Pig” book by Walter R. Brooks, and am now moving on to my second. What fun! And what a fun way to cool off!
These escapes are not just in the realm of youth. We adults can also cocoon in cooler climes with our favorite characters from childrens’ and young adult literature – and discover more that have been written since. We can lose ourselves in those intriguing stories, creative scenarios, and characters that seem to become friends and who beckon, “Leave your pain, the heat of suffering. Come. Linger. Read. Enjoy!”
The heat will continue to bear down, and time passes anyway. Why not spend it with an old, cool friend?