Hit again and ‘gain
My face just won’t crack
Made that face long ‘go
And, indeed, it did
It stayed that way
Now my well-made face
At once young and old
Has no home with me
Bring down the hammer
Chips off the old block
Is all I can do
Proof in the pudding
I lack the strength
To destroy myself
Copyright 21 August 2020
Revised 19 April 2021
Fight or Flight or Freeze or …fuggedaboudit — pronounced di-ˈnī(-ə)l! Or … work it out. Cooperate. Negotiate. Give and take. Federate.
Federate? Yeah, no. I’m going to have to forego alliteration here and stick with my go-to word for my favorite type of artistic process: collaborate.
For me, collaboration is not just working together. Rather, it is an intimate process of channeling different perspectives and talents toward a common goal. It’s often challenging and sometimes counterintuitive. It demands consideration (meaning deliberation, examination, attentiveness, respect) and letting go. In my experience, the most rewarding collaborative experiences involve a lot of letting go. Collaboration may not be the best process for every project, but when it works well, different visions and approaches accommodate each other and create something wholly unique that would not have been conceived without all those adaptations along the way.
So, what on this bluish orb teeming with life do I mean by collaborating with my Wolf? How do I accommodate and adapt to and with these diseases? Diseases of unknown causes, at that. Does collaboration mean we will never struggle? Hahahaha! Sorry, I meant to say, no. Hell no! Collaboration is a very different approach than fighting, to declaring oneself a warrior against a foe, but that doesn’t mean a collaborative effort will be free of conflict. No, not at all.
Originally, I titled this series, “Collaborating with a Predator” — then I quickly realized that sounded as if I were aiding and abetting the likes of Jeffrey Epstein. Nope! Hell no! Hell no to the 10th power! I just wanted to convey my idea that my systemic lupus is wolf-like, not just because of the Latin nomenclature, but due to its near-predatory nature. Wolves are true predators, organisms that primarily obtain food by hunting, killing, and consuming other organisms. Sharks are predators. So are humans. And Venus flytraps. Sea slugs, too. But I digress…
Obviously, I’m going for an analogy here. Metaphor, even. I think. But, clearly lupus is not an organism.* It does not hunt for food to bring back to its den of adorable, baby antibody luppies. But it is like a predator in that it claims its host as its territory and causes damage to the organs and tissues within by killing healthy cells. All sorts of prey all over its territory. (SLE is one of the more wide-ranging autoimmune diseases, quite the omnivore.) All this killing depletes the host and almost appears to feed the disease. It may not be accurate to say lupus targets its prey, but it has its favorites: skin, kidneys, heart, lungs, brain. Blood. Joints. Mucous membranes. And without intervention, it just keeps inflicting damage.
So, collaborating with a predator, something that naturally kills and for which there is no current means of eradication — a cure, in this case. There are treatments, attempts to tame the beast, if you will. Beat it back into remission, into hiding. But while some might protect the organs for a time, they may not help the person feel better. Or to know how to live with this enigmatic disease. This refractory disease.
“Lupus is an inflammatory, refractory disease.” That is one of the most affirming sentences my lovely rheumatologist has said unto my self-deprecating person. Refractory, as in resistant to treatment. So, it’s not my fault! This thing is just obstinate. And wily. Almost, slippery. I gotta learn to live with it. Even as it keeps changing, adapting.
I live with several chronic diseases. (It’s crowded round here. No wonder I’ve gained weight!)* One of them, asthma, has been with me since birth. Thankfully, my asthma has been well controlled for decades now. But that was not the case when I was young. As a child, I was persuaded to fight through asthma attacks — to “persevere” — despite drowning in mid air. I had a number of close calls. But hey, whatever doesn’t kill you, may damage your bronchi and your confidence in the adults assigned with your care.
I was told I would grow out of my asthma, but in my first college go-round, the miasma of chem labs and major personal stressors took my asthma to a whole new level. (Yes, I enjoyed that!) I had to stop fighting — on more than one front — and decide to accept and work with my chronic health condition. That shift in mindset led me to change my college major and my long term goals in really big ways — neither quick nor easy, but oh so necessary — and to become an advocate of affordable healthcare and accessibility services to boot.
In 2019, after a long internal struggle about social media, I joined Twitter.* Eventually I found the disability community there. My people! People owning their everything. People fighting for accessibility, economic justice, dignity, respect — but not against themselves. Not against their disabilities. Or their defining conditions or illnesses. Not against who they are.
Embracing my identity as disabled and feeling welcome in a marginalized community has been key to my wanting to live and to live well as I am now. And becoming disabled and proud is a product of my collaborating with my Wolf.
The last five years presented so many significant life changes and challenges — serious illness and disability were not the only components of that big-ass iceberg*— that all together left me feeling unmoored and unsure who I was through much of it. Was I a dancer, still? Or no more, after 33 years? (33 years … It just had to be 33, did it?) What was my role now? What did I want to do? What could I do? Why does everything keep changing?
But now I have a new identity. One that embraces my current reality and enfolds my past roles as well. And a community. I have support. I can be disabled and proud. I can be sick and live well, which is so much harder to do than it is to say. Or type. But that’s all part of the learning, adapting, and letting go of collaborating with my Wolf.
So, I have a collaborator. Not the collaborator I wanted, to be sure. At times I still have difficulty fully accepting this rest-of-my-life companion. However, the more I do — the more I dive into the collaborative experience with my Wolf — the more I learn. The partnership allows me to explore my health and investigate what does and does not help me from that unique perspective. For example, I’m now thinking about my near lifelong sleep issues in a new way. Instead of trying to fit my problem into other people’s models, I have motivation and (dare I say it?) chutzpah to draw up something personal, bespoke, if you will. A combination of a rare sleep disorder, cyclical pain, hypervigilance á la PTSD, and behaviors I’ve adopted over the years that reenact (or attempt to do so) aspects of my childhood abuse. (That last bit may sound strange; however, conscious or unconscious, “re-victimizing” behaviors are not uncommon among survivors of childhood abuse. More on that in future posts.)
Likewise, I have started on a novel approach to the common and very frustrating symptom of brain fog. I’ll write more on that as I discover what works and what doesn’t. Allowing room for failure is vital! In a holistic sense, this partnership is deepening my understanding of some of my unconventional ideas about the practice of medicine from my days as a movement therapist. It has further illuminated for me the reactionary nature of our healthcare system that puts patients on the defensive. That incorporates shame in matters of disease avoidance and treatment, with a subtext connected to morality, sin, and redemption. I’m talking about so-called Western modern medicine and so-called alternative medicine both.
I’m still working this out. Or, trying to. Failing … Succeeding? Learning! Is that the space between winning and losing? Also known as Life?! That’s what this here blog is for, sharing my failures and thoughts and lupine whatnot. I don’t want to fight or be heroic or inspirational. I don’t even particularly want to be a fine example. I just want to be okay, as I am. Worthy. Disabled, yet worthy of consideration. And access. Accommodation. Even if I fail. Especially, when I fail.
Collaboration is the aim. Accepting the shifting sands, letting go, exploring unusual ideas, grieving, relinquishing harmful judgments, adapting, embracing vulnerability. Partnering with my autoimmune diseases promises a bumpy road ahead. And the potential for a life lived on my terms. And maybe a little enlightenment now and again. Which I will share with y’all.
In collaboration with my good Wolf, I shall howl!
*Nor is lupus caused by an organism, as far as medicine knows. Just wtf lupus is — it’s hard to say, other than major malfunction of the immune system. “It” can “attack” almost any organ and system in the body. So it’s like the immune system is now under the direction of Snidley Whiplash? Or, Jared Kushner! My sincere sympathies for all good, decent people named Jared!
*I believe one doc thinks I’m a type of disease hoarder. Calmly practicing my hysterical magic, collecting ills for some ridiculous womanly reason. More on that in the future!
*@aqrobattz Do you get it? Well, do you? Huh? Do you? I mean, seriously, do you get it? Huh?**
**I apologize for the obnoxious neediness of that last footnote!
*Respectfully, aren’t all icebergs big-assed? (Asking for a friend.)
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!