Stuff I’ve collected during my long dark journey of the psyche these last many taciturn months. I will reveal some of my top secret adventures in due course. Meanwhile, some stuff …
Late 2019 and into 2020 death seemed all around us and especially close by. Late 2021 into this year has been something of a sequel. Plus pandemic season 3. (Series 3 for you Brit types?) What to do?! Before, I’ve had things to do and energy with which to do them. But this time, I shut down. It’s not easy finding a new starter for a 59 year old model!
Much of the best parts of our fabulous state of New Mexico is ablaze this month of May. None of the fires are truly near us in Albuquerque, but I feel the devastation all the same.
When the going gets tough, the tough get going. Because it’s their time to shine, to get going, do their thing. Right there in the name. They’ve been waiting, the tough have. Laid in supplies. Got the proper tires, presumably. Meanwhile, the tender can just take a break — yes?!
The Lupus Foundation of America (LFA) dubs its members with lupus, lupus warriors. Being cast as a perennial fighter due to chronic disease is not just an LFA thing. I’m also a migraine warrior, according to more than one support site/online community. Although I haven’t seen similar troop-like nomenclature for my other ills (Sjögren’s soldier? Nope. Myositis mercenary? Nah.), the notion of being thrust into battle with one’s disease is pervasive in many, if not most, types of medicine, wellness, healing, adjunct support groups, etc. A diagnosis serves as an induction notice.
Assigning the role of warrior to folks with lupus and other chronic illnesses seems to work for a lot of people. If it works for you, I am sincerely happy for you! I have no desire to dilute or deny something that helps others. At the same time, it really doesn’t work for me. And I’m confident I’m not alone. Well, pretty sure. Kinda sorta … Okay, my neurotic tendencies aside, this is for all those other sick non-warriors out there.
As is the case for most people with lupus, getting to that diagnosis was a long slog for me. Three years before, I was diagnosed with dermatomyositis, a rare autoimmune disease of skin and muscle. And 7 syllables! Unaware at the time, I jumped into the warrior role. I was following expectations, if not orders. Medicine and wellness are designed around doing one’s individual utmost to get better, be well. Fight the good fight. It is your responsibility to procure the best medical care, provide for your changing needs, do the research (but be careful!), rise to the challenge and live right – eat, sleep, exercise, reduce stress just so. It ain’t easy. In fact, it’s so hard it takes the heroic efforts of a warrior. There are no guarantees. But there is the promise of “victory.”
So seductive! Of course I want to be healed, to feel better —and not just temporarily. Or at least regain some lost ground. I definitely want to be the good patient and do everything the right way. I’ve had more than my share of hardship,* so I know I can persist, can do hard work. And, um, yeah … I’ve fantasied about others recognizing my struggles, praising my fortitude. But after a couple tours of duty, I realized this mindset was a trap for me.
Because – and this is truly radical, in my opinion – there is no right or wrong here. Lupus is not my enemy. It is a mysterious disease process in which the immune system attacks healthy tissues in the body. While I like to anthropomorphize as much as the next guy,** there is no clearly identifiable cause of lupus (or my other diseases) like a pathogen to cast as nemesis, despite a lot of very good research. And my immune system continues to function as it is supposed to in some ways, while also malfunctioning. As we have learned in these pandemic times, the immune system is hella complicated!
No, I’m not going to start smoking cigarettes or anything clearly contrary to my living as well as I can. On the surface, not much has changed, really. But philosophically, I’m letting go of the notion that I have to fight to live well. I reject the idea that accepting my health as is and embracing my disabilities in order to best accommodate them is defeat. I’ve spent most of my life fearing I’ve done wrong, convinced I am wrong. I am so ready to be done with all that! I do not need to be anyone’s hero or inspiration. I just want to live well as I am. I accept myself as chronically ill and disabled woman living with my very own inner wolf.
*Where do Hardship Shares get traded? NASDAQ? S&P? Why on earth did I stock up on those?
**Obviously, The Next Guy is your go-to expert when it comes to trading in hardship shares!
Acceptance is hard. Very hard. Even when it logically doesn’t seem it would be. Wedding proposal accepted? Accepted to a great college? Lots of big changes follow. But even with all the excitement and (hopefully) support, information, and extra hands, you may still find yourself on the threshold thinking, “Wow! Is this really happening? Am I even ready for this?”
Acceptance is the final stage of Kübler-Ross’ Stages of Grief, originally formulated with regard to terminally ill patients. I thought I had lupus long before my diagnosis. I really wanted to be wrong. Finding out I was right did not fast track me past denial, straight to acceptance. Lupus is a serious, chronic disease, that can be fatal, although most with lupus live normal lifespans. My Dread Disease, as I’ve half-jokingly dubbed my immune system 180° more than once, doesn’t (usually) feel terminal. But it has been disabling. At times, debilitating. And transformative. Truly accepting this reality is an ongoing process. At least for me.
Lupus is Latin for wolf. Supposedly, the disease was so named because the hallmark facial rash resembles the “mask” of a wolf’s face. There is some debate about that name origin, which I will not be discussing here. You’re welcome.
This is an introduction to my philosophy of accepting and living with chronic illness. While the core of this blog is about learning to work with my inner wolf, aka lupus, I will also address disability, identity, medicine, creativity, trauma, mental health, women’s issues, and whatever else I think relates. There will be stupid jokes. And dog photos. I love dogs!
And I love wolves. Always have. All critters. Nature specials are my jam! I want to be reincarnated as Sir David Attenborough, the celebrated naturalist. That’s a joke. Maybe. I also want an Afro. Sir David Attenborough but with the looks of Erykah Badu. Ok, that’s a joke.
Demonizing wolves never sat well with me, even as a child. It seemed to me that the big, bad wolf was only bad because it was acting as a human predator would, instead of as a wolf. I’m not saying wolves aren’t scary. They deserve our respect. But they’re not bad because they’re predators any more than sheep are good because they’re prey.
My point is … I have come to accept that as scary and wild as my lupus is, the only way to live well with my wolf is to embrace it. I do not want to fight it. This does not mean that I am giving up or eschewing medical treatment. Rather, I have found a different, non-combative mindset to guide my living with the wolf — a philosophy I will expand upon in the next post. At its core is acceptance.
My name is Deb and I’d like you to join me in getting to know My Good Wolf.