And what do to when this no longer works

Okay, fine. I’m ill. 

It surprises me that I am even considering writing this post because I am not allowed to be ill, I have never been allowed to be ill, and part of me is sure that if I just refuse to be ill, I won’t be ill. And yet — it appears that I am ill, and it may be that I am only looking foolish by denying it.

But I find it all deeply complicated, this illness thing, and I may need some help untangling it.

Big girls don’t cry

My parents raised me and my siblings to value a certain stoicism. Sometimes we were actually told, “That doesn’t hurt.” (And you know what? Sometimes it really didn’t.) Our pragmatic mother informed us, only half joking, that were not allowed to have allergies or crooked teeth, since treatments for such conditions were expensive and we could not afford them. 

None of us five children had any catastrophic disability, thanks be, though we each had our various ailments over the years.

And I instinctively knew what an inconvenience it was when we had to stay home from school as germs made the rounds of the neighborhood. Several of us had chickenpox at once, as I recall, which we found to be merry fun as we all ran around making chicken noises. I’m sure our mother found it not so merry at all. Our entire cohort is now getting either shingles or an expensive shot, of course.

It wasn’t all bad. The sick child got to lie on the couch in the living room and watch daytime television, sometimes eating saltines and drinking 7-Up, depending on the diagnosis. 

This was pre-cable and internet, of course, and I will leave it to your fond memories what the daytime television shows were. My mother considered daytime television boring enough to cure anyone of anything.

But my specialty was painful, recurrent ear infections, the kind that keep a child up sobbing for hours in the night. Then, the exhausted mother can only helplessly repeat, “There, there, honey. There, there.” There is nothing else to be done, and the only thing that relieves the pain for the child, until the eardrum actually ruptures, is crying.

But you’re not supposed to cry.

So, overall, I was never easy about being ill, since even daytime television privileges didn’t overcome my pain and fear over angering and disappointing my parents.

Fortunately, my “constitution,” as they called it in the 19th century, was fundamentally strong. As a kid, I bounced, and as an adult, I could work two jobs and raise kids and pull my weight. I could handle those damned ear infections, hit them with a Z-pack, or whatever, and keep on going— I never needed to say “uncle,” and this big girl didn’t cry. 

Photo by Fernand De Canne on Unsplash

And then the years go by

And then there were the illnesses of mind that emerged during adolescence and flowered during my early twenties. In today’s parlance, let’s just say that the messy realities of bipolar disorder and its attendant anxiety did not “spark joy.”

So I brutally KonMari-ed that crap right back into the drawers, through medication, and routine, and hard work, and frequent white knuckling, and, of course, a diligent compartmentalization. I did not talk about those illnesses except as, well, problems solved.

I channeled my energy, both mental and physical, into work, family, the future; changed careers like someone changing identities one jump ahead of the feds. I constructed elaborate routines and habits to draw upon during lean times of debilitation or exhaustion, and that usually worked.

If I was somehow using up the stores of my “constitution,” or wasting some reservoir of health, I did not let myself think it. I was strong. I was tough. I did not “do” illness.

And perhaps this grimly positive attitude did help. As each new condition cropped up — a cervical dysplasia here; a couple of chronic GI conditions there; the erosion of joints; the heart palpitations; the mitral valve thing— I could discount each one. They could be managed. They could be handled. 

I would be fine. 

Illness would not define me.

In three short years

I began to plan for my retirement (early retirement, I always quickly say, so you’ll think I’m young) three years in advance of the projected date. I even made a lovely chart, marking off each month with quotes whose significance I now forget.

I had no idea that my body would begin to crumble, one bit after another, just in time to go straight to hell by the time I set it free. Looking back, it is actually entertaining to recall.

It begins with an insignificant dental event. First, I have a tooth extracted, because an old crown has finally failed. The dentist inserts a bone graft, which gets infected. That becomes osteomyelitis of the jaw, which lingers for weeks till I need IV antibiotics.

Then a CT scan to check the graft shows I have an unruptured brain aneurysm, big enough for a surgeon to recommend it be clipped. So I have the craniotomy, and I recover from that, seemingly all right. (We have lots of fun with that, though. We go around saying, “Well, it’s not like it’s brain surgery — oh, wait! It is brain surgery!”)

But then, after the craniotomy, somehow I mysteriously lose a portion of my field of vision in my right eye. And I also develop daily cluster headaches, really sharp bastards, that last for 15 or 20 minutes.

So then, every few months, something new turns up. And I am not shopping on PubMed for this stuff, either — these are incidental findings, or stuff I’m trying desperately to ignore but have to address despite myself. 

So now, at a time when I should be fully enjoying a glamorous college-town retirement, my dance card includes definitive diagnoses of systemic lupus erythematosa, epilepsy with partial seizures, recurring trochanteric bursitis, and freaking Viking’s disease, which you’ve probably never heard of, but which makes your hand sort of draw up, and which is cool because I happen to be — ahem — part Viking.

I know it’s not logical, but I can’t help thinking I should have left the damn tooth in. 

Photo by Matt Bowden on Unsplash

Why am I telling you all this?

I am aware that my whole long stupid list of ailments still falls short of a lethal dose. None of those things, by themselves, will kill me tomorrow. They will just all hang around threatening to kill me. Maybe like a pack of overgrown delinquents in the hallway.

So I suppose I could just ignore them all, as I used to do, except that unlike the imaginary delinquents, these jerks are sucking up the air in the room, and I know it. Sometimes they knock me down, or take my purse. Metaphorically speaking.

Three short years ago, I could work a full day and often a second job, take a brisk exhilarating walk for exercise, clean my own house, and putter in the garden. I always thought once I retired, I’d still have use of that same vigorous body to write and create and you know, finally look intothat tai chi class.

And I had naively looked forward, upon my retirement, to spending eight or nine hours at the computer doing my work, not someone else’s work. I’ve been desperate to write these messages I believe in — words of love and warning and joy that I want to share with the world before I die.

Yep, I made G*D laugh. I told G*D my plans.

I did not know how fragile I would begin to feel.

I did not know how fiercely I would mourn the time I would lose to any moment of malaise.

I did not know there would be flares, and weeks of wasting, and joint pain, and fatigue, and one damned indignity after another — I won’t go into it all, because remember I am embarrassed and angry and ashamed to be weak or ill— that would cut into the time and effort I could devote to the one last thing I want to do now.

Photo by Kelly Sikkema on Unsplash

I know it could be so much worse. But it could be better, too.

Other people deal with far more complicated and threatening conditions all the time — in fact, I am fond of saying, “Everybody’s got something.” I have never thought I had the worst of situations, and I have yet to meet the one person on the planet who I thought had the very worstof situations.

(Sorry; it’s probably not you, either.)

Moreover, I’m embarrassed at how ambivalent I remain about illness itself — specifically, my own. I seem to want both your sympathy for my ailments and your admiration for not seeking sympathy for my ailments. I apologize for the mixed messages. It seems I don’t know any better yet.

But this is my new reality, and when I write about what I believe is important, it is a fragile reality I will be writing from. Mine is no longer the voice of some tough kid who goes too fast and feels no pain. 

Perhaps illness is a little like old age come early. Children with illness look like tiny elders; they look like old souls, learning young the lessons of time. (I did want to be precocious when I was a child, but this was not what I had in mind.) 

So now I realize it is completely irrelevant whether I refuse to be ill or not. It appears that I am ill and that, furthermore, I am allowed to be ill. If my previous strong-minded refusal to give in to illness did, in fact, help keep me healthy, that’s fine. But it does not follow that my current illness is my fault.

I’m pretty sure these illnesses are not my fault.

I am surprised to tears when I realize that it wasn’t my fault that I got ear infections as a child, and it probably isn’t my fault now that I’ve developed lupus. If people want to put that on me, through some kind of arcane negative-mind-body theory, here is my ever-so-evolved response: they can bite me.

Life is too fragile and we are too tender to go around blaming ourselves for our vulnerabilities. As an adult, I am responsible for treating any vulnerable creature as kindly as I can. And that includes me.

Today that means, not daytime television, but the outrageous luxury of using the laptop in bed and considering using voice recognition software. I am also allowed to eat saltines. 

Most importantly, though, allowing myself to be ill means that I remember not to waste a single blessed minute of any given day.

Perhaps when we are cursed with good health we forget how easily our lives can go slipping away — how the vigor we have counted on may simply not be there for us when we need it for our true work. That has certainly been true for me. 

So… I’m ill; I have illnesses of the body and mind that I am privileged to care for and maintain. It doesn’t mean despair or decay; it simply means this is not a perfect little earth suit. It means its health and happiness ebbs and flows; it means that sometimes I’m better off than you and sometimes worse.

It means that sometimes I’m crying in pain in the night. Oh, well. That’s life.

But it also means that if you are crying in pain in the night, I’ll know what that’s like, and I can say, “There, there, honey. There, there.”

Photo by juan pablo rodriguez on Unsplash

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