I’ve been having a lot of interesting conversations lately on some of my lupus pages. Our current thread of conversations started with rashes. (Having a chronic illness leads to some weird conversation threads….) See the name lupus is generally thought to have originally come from the 13th century and stemmed from the red rash it leaves on the sufferer’s face , which some physicians seemed to think looked like the bite of a wolf. Now in this day and age of political correctness we refer to it as the “butterfly” rash so as not to offend anyone.( Another term for the rash, the medical one, is malar rash.) Well, we talked about butterflies for a while, and some of us do get the butterfly rash, and some of us don’t. ( I do.) But one of my friends, new to the lupie world, asked a very good question. She wanted to know , how come so many of us post butterflies for our support and conversation pages, when our disease is named for the wolf? I guess it kind of took me aback. I know the reasons we post the butterflies. They represent change, as in constant change of the disease we are fighting every day. They represent strength, the strength it takes to struggle and emerge from their cocoons in order to fly. The fact that though their wings look quite delicate , but are actually a lot stronger than they seem. And of course , they’re pretty. They also represent new life and hope in many faiths and religions. But then I began to wonder if maybe we hadn’t given the wolf a bad rap. I myself have had such a severe case of lupus that thinking of the wolf as my friend has not been necessarily my first thought in this fight. But perhaps I’ve had one of my best players “on the bench” .Maybe I’d been bringing a butterfly to a wolf fight so to speak. Wolves are scary looking animals. I mean they’re huge for one thing! , weighing anywhere from 80 to 140 pounds. They are fierce hunters , known in packs to take down even the North American bison. So if you think about having a disease named for something so aggressive , that can be pretty intimidating! But then I decided to do a little more research on it. I said to myself if I can use the wings of the butterfly to my advantage in my psychological war, I’m going to get some of this lupus vulgaris fierceness for myself too! Wolves as symbols are part of many cultures from all over the globe , but I suppose the most notable of them are the North American Native peoples. Just reading through the stacks and stacks of information on their histories could take a lifetime to learn about their amazing stories, but some of the ones that stood out to me the most were the ones that talk of the wolf as standing for “teacher”, “guide” , “strength” , “unafraid in the face of death” ,but also possessed of deep faith and profound understanding. I was very surprised. I think maybe people see the images of the wolf devouring its prey and think only of their bodies being consumed by this hideous alien disease. After doing all my reading today, I’ve decided to fly into battle on my butterfly’s wings but with a pack of wolves for backup. I think I can use some more teachers, guides,and warriors with strength unafraid in the face of death. Not just fierce hunters but possessed of faith and understanding too. Cause after all, when you’re fighting for your life, why leave your biggest, scariest looking soldiers at home?
I have never been what you call the most graceful person. You know that stage you hit when you are 10 or 11 and your body seems to be growing faster than you can keep up and you are all arms and legs? You stumble around, and bump into stuff. You trip over your own feet. The ground is flat, but you fall anyhow. Well, I never did grow out of it. Sucky part is, I didn’t even get the “growth spurt” to go with it! My husband sweetly says I am the POCKET version. But , back to the graceful part. I have whacked my not-so-funny bone more times than I care to remember,thumped my head getting in and out of automobiles, dented my knees on chairs, actually broken my foot, on the vacuum cleaner of all things, more than once, (same foot, same vacuum cleaner!) and as of yesterday , whacked my right four toes so hard on the coffee table that the two middle ones are now the color of coffee without cream, bent at a lovely angle, and the middle one is missing its nail. Needless to say, I was sorely tempted to turn the air as black as the toe , but refrained. Inexperienced people would be on the phone about now with their physician , but I, who seem to have taken small bone crunching up as some sort of extra -curricular activity know that they would only do with it what I have done, which is tape it , and try to keep pressure off of offended member. Needless to say, reporting for today, said toes do NOT really look OR feel any better, so I am sticking close to the sofa today. Positive point of that being , maybe I can’t injure myself any further from there! 🙂
You know when people tell you” Enjoy it now, they’ll be grown before you know it?” Well, I am finding out how incredibly accurate that saying is. My oldest son is going to be 14 at the end of this year, and the youngest 12 years old. I guess it just sinks in with me……..the firstborn will be getting a driver’s permit, some small jobs, a vehicle………..a girlfriend!(shudder, shudder) The craziest thing about it, is that it just happens so gradually. It’s a moment by moment, little by little process. Every day they learn a small something that takes them closer to their goals of being an adult. Steadily moving forward to that uncharted land of adulthood. To me that’s almost more heart wrenching. It’s like peeling a Band-Aid slowly. It would almost be better to just rip it off , one swift jerk, then it would be to do it soooooooooooooo carefully. I mean , don’t get me wrong. I’m enjoying every day of being a parent, and I love my kids more than anything, and I don’t REALLY want them to be grown already. I guess really what I’m trying to say is , I’m being selfish. I want to keep them as pacifier sucking , onesie wearing, sippie cup drinking, kissable babies. I wish sometimes that we were still doing the baby powder bottoms, and the tiny shoes and clothes. I miss the “Hold me Mommy’s !” and the “Kiss my owies.” Of course , there are some things I DON”T miss. I don’t miss 2 am feedings. Or the constant , “NO! Don’t do that’s !” I am grateful that they are maturing into young men and not just young boys. I hope whatever time I have had with them , has made them people the universe needs. And I pray that whatever time I have left to shape them, I put it to good use. So, I know that for every day that I pull the Band-Aid back a little further, that they are growing up, and maybe, just maybe, I am too.