Programming Note: Due to an ongoing health issue, I am not scheduling clients at this time. This particular entry in the blog represents personal reflection and is not clinical in nature. I am writing these meditations about illness for myself, and also for the folks who have experiences like mine and appreciate the mental camaraderie of recognizing that other people share the same journey. If you’d like to read my clinical blogs, just click a few entries back, and enjoy. If you’d like a referral to a therapist I would send my own mama to see, please feel free to reach out by email and ask for a few leads.
In my family and friend group, we call my still mostly-undiagnosed illness Gmork. For the uninitiated, Gmork is a Big Bad in the book and movie, “The Neverending Story.” He’s the literal representation of “The Nothing,” a creeping emptiness that uses despair and hopelessness to erase the creatures in Fantastica, the world in which a good deal of the novel is set. I’m happy to be sitting with Gmork, teeth and all, rather than The Nothing, don’t get me wrong. But, some days are better than others from a wanting to flip the universe the bird standpoint.
Emotionally surviving chronic illness, I have discovered, requires a weird alchemy of both hope and surrender. There are the things you could do before that you cannot do now, and those old friends of yours are constantly looking at you from the sidelines where they will probably stay. And then, there is the ultimate necessity of fixing your eyes on the things you can do, new things you’re now exploring to replace the old things, and the general emotional and spiritual gauntlet of redesigning your sense of self when you had not expected to have to do so. It’s all a bit like coming home to the same house, but someone has rearranged the furniture, burned some of the stuff you liked best, and installed an alarm system that goes off at increasingly weird and inconvenient times.
I have been coming to terms with any quixotic fantasies that I will be able to approach my life at the same unchecked velocity with which I lived it pre-Gmork. A friend of mine with chronic illness once told me that she has an actual, literal spreadsheet of personal responsibilities. It details, via a points system, how much any one activity seems to trigger exhaustion and pain. When she’s architecting her life, she calculates from this spreadsheet if the constellation of things she wants to do that day will numerically put her into a flare. She explained that, in a world in which her body will present some muddle of intransigent fuckery most days, she’s trying to cement any amount of control she can.
Before I was sick myself, the therapisty part of my brain would have seen that as a truly elegant psychological workaround to pretend as though the illness didn’t have its fingers in every pie. But, now that I’m standing on this side of the chronic illness fence with her, I recognize the astounding courage and pragmatism of micro-mapping your day so that you can truly own some of it. Any of it. You can sink in the whirlpool of control your illness has over you, or you find the moments of buoyancy and ride those bastards to the shore as often as possible. Yes, Karen, that is entirely the clinical way to say that.
I realize in retrospect, that I have been doing my own version of the spreadsheet idea for at least a year. Except, mine usually involved budgeting in enough calories for a full-strength Coca-Cola and candy bar at 3 p.m. as a way to catapult myself over the deep chasm of energy that opened up between work and kid activities at night. When I look back on this now, I feel such tender sympathy for a person who was already becoming very ill, and in the absence of medical help from doctors who insisted that the exhaustion was some refractory hallucination, forged her own path toward keeping all the horses pulling in the right direction. I’m genuinely moved at my own ingenuity—all the sugar, caffeine and general emotional/energetic metallurgy in which I engaged to keep it all moving. I was gluing my life together with sheer force of will and a mental blueprint for success that was architected way back in my 20’s. I could do it all, damn it. All of it—clients, kids, husband, squatting my way to a firm ass. All. Of. It. It worked out great too, until I couldn’t walk well or think well anymore. That was kind of an unexpected bummer.
Middle age is at once both a strange and fertile time to renegotiate the contracts you have with yourself about who you are. In some regards, you’ve probably encountered many of the milestones you dreamed about as a kid—college, meaningful partnerships, career climbing, children, if you wanted them. Then, some cynicism about the seriousness of this adulting enterprise sets in.
You realize that all the fucks you had to give about the invisible peanut gallery watching and grading your trajectory are largely artifacts of how you saw adults grading other adults when you were a kid. None of it was qualitatively real to start with. Don’t discount the epiphanal magnitude of that moment when you have it. If it’s now, go have a margarita under the stars somewhere. Ponder it.
I think this may be the reason so many of my friends have suddenly gotten tattoos, or dyed their hair pink, or decided to write their imperfect memoirs. I’m here for it. If everything didn’t hurt when someone touched me, I’d go get a tattoo too. Or maybe reframed in the positive, it’s going to hurt anyway, so I might as well go get a tattoo.
When I was in my 20’s I lacked the interior expansiveness to sit quietly and contemplate changes that ushered in permanent differences. I am, and always have been, my favorite main character. In the story of my own life, I loom large. But, the part of the story that I anticipated and planned for has kind come screeching to a halt. The version of me that got me here is retiring and making a space for someone new. I get to decide, I think, if that space is a deep abyss or a fertile womb to birth the next iteration.
There’s a line from the novel version of the “Neverending Story that reads, “If you have never wept bitter tears because a wonderful story has come to an end and you must take your leave of the characters with whom you have shared so many adventures, whom you have loved and admired, for whom you have hoped and feared, and without whose company life seems empty and meaningless…If such things have not been a part of your own experience, you probably won’t understand what Bastian did next.” What Bastian did next, for the uninitiated, is steal the namesake book of the story and push down the first domino in becoming a braver, bolder and completely unexpected version of himself.
I don’t mean to put too much of a shine on the vicissitudes of having one’s body decide to wild out on you. I like to think that there are other ways I could have built whatever character and grit is being forged in the fire of this experience. But, since the universe didn’t give me that option, and instead only gave me this one, this is the shot I have to figure out how to be happy. Maybe that’s happening for you too.
To that end, I was going to close this blog with an inspirational line from a Rumi poem. Here it is:
“Tear off the mask, your face is glorious.”
And, I was going to put it to your consideration that you and I are not less valuable, and might in fact be more complex for the unusual experiences we have had because our meat suits decided to go their own way. But, perhaps that wraps it up with too fine of a point. We’re all waking up and checking in with our bodies to see what they will present us with each new day in ways non-ill people don’t have to do. What will we get that day in terms of pain, energy and mobility? Given that, sometimes the mask is not for others—it’s for ourselves too, to claim what we can, when we can out of absolute unyielding desire. Some days, I have to go out and pretend to be the old me. Because I want to…because I liked her even though she was naïve about some stuff. It’s complicated, isn’t it?
Chronic illness is emotionally complex. Pain is not monolithically physical, but also lights lots of little campfires of spiritual and emotional hurt as well. Bukowski states it perfectly:
“Pain is strange. A cat killing a bird, a car accident, a fire…. Pain arrives, BANG, and there it is, it sits on you. It’s real. And to anybody watching, you look foolish. Like you’ve suddenly become an idiot. There’s no cure for it unless you know somebody who understands how you feel, and knows how to help.”
I’m standing in the gap with you guys, understanding how it feels, just trying to make it work day by day.
And I admire you and I so very much:
For our courage in doing daily things that shouldn’t require courage.
For laughing at the absurdity of managing our time and energy levels like we’re toddlers.
For the warrior energy it requires to get up and go when we now have some bullshit, painful version of the flu every day.
For rolling out on our scooters and in our wheelchairs when getting up isn’t possible.
For the nights spent alone Googling symptoms and trying to piece it together when the doctors don’t know.
For being mothers, fathers, sisters, brothers, healers, workers and humans who are showing up in the world when the world seems much more complex than it did before.
I am proud of us for all of that.
This is usually the part of the blog where I invite you in to see me. However, I plan to largely take the rest of 2020 off from my practice to rest, write and heal a bit. I’ll be out in the community teaching a few meditation classes here and there, and I would LOVE to meet you at one of those. Please feel free to shoot me a line if you want connect, share your own experience, or need a referral for a great therapist I trust.
Your Partner in Healing,