I should not have let the pain get so bad that I was forced to call the doctor’s office after hours and request a stronger prescription.

However.

In the future, if you should receive a similar call, perhaps you could remember that if someone informs you that they can no longer walk or raise their arms, they are in TREMENDOUS pain.

Which makes them feel really vulnerable.

So perhaps that is not the best time to mention that, in your considered opinion (based SOLELY on chatting with them for approximately 90 seconds on a tenuous cell phone connection, where only one of you can claim English as your first language) “they are probably suffering from lupus.”

(A friend of mine who has been dealing with her own chronic health challenge over the past 5 years summed up this situation quite well when she was commiserating with me and was all, “Oh man, I know. It’s like, ‘give me a purpose or gimme a gun!’ “)

Right now I am working on a simple pattern that basically consists of the following three steps:

1. Cast on 108 stitches

2. Knit every stitch for 72 rows.

3. Bind off all stitches.

As far as difficulty level goes, this is pretty much the knitting equivalent of “falling off a log”.

But knitting patterns are not always so easy, or so enjoyable, and this is due to the unfortunate fact (about which I was grievously uninformed ahead of time) that knitting involves copious amounts of math. And math? Is pretty much my mortal enemy.

Now for some people (and here I’m specifically thinking of my mother), this is not a problem.

A while ago my mom inherited some yarn from a knitter who was moving overseas, and when said knitter then became pregnant, my mom decided to use that yarn to make her a baby blanket. The only problem was that her pattern called for 1,000 yards of yarn, but her skein only consisted of 600 yards.

“That’s no problem,” she thought. “It’s just a baby blanket, so I’ll just make it half as big.” (She thinks these kinds of thoughts because she majored in math. We liberal arts majors know better.)

Such was her dedication to this project, and her belief in the power of numbers, that she then performed an extensive series of mathematical computations including (but not limited to) the formula for finding the area of a rectangle, square roots (SQUARE ROOTS!!), rewriting an entirely new chart of the pattern, and something involving multiples of 7. She then took the revised pattern into work to consult with her other knitting friends, and they all agreed that this project was a go, because-AND I QUOTE-”The math was certainly there.”

And of course, that is the exact moment that, despite her meticulous calculations, despite all her years as a math educator, and despite her devotion to the pursuit of higher mathematics as evidenced by the attainment of her Master’s Degree, math laughed manically, spit in her face, and then flipped her the bird.

Can you see where I’m going with this? That’s right. After all that, it didn’t work.

I don’t remember what happened after that, because all I could think about was the fact that her story did not end with the words, “and then I set myself on fire,” which is exactly what I would’ve done when, drawing deeply on my skills as a liberal arts student, I interpreted the inconsistency of math as an existential comment on the ultimate meaninglessness of life itself. As would you.

But she was surprised that it didn’t work. I think it’s because she is still laboring heavily under the delusion that math is true whereas I, who was smart enough to major in languages, know that math is, in fact, just a giant illusion, designed specifically for our torture.

Because, oh yes, math has played its sick jokes on me too, most recently when I decided to learn how to knit socks.

I played it fast and loose with with the math on my first attempt, which left me with one sock wide enough to fit both of my feet at the same time. While this was quite efficient, it was also extremely impractical, and so I decided to buckle down and measure for gauge on my next attempt at creating knitted footwear.

I had reached the point in the process where you are knitting the piece between the end of the heel and the beginning of the toe, and I wanted to know how many more rounds I had left to knit, in order to increase from 3.5″ to 7.5″.

I dutifully measured my work after knitting 6 rounds, and found that I had increased from 3.5″ to 4″. “Great,” I thought, “Apparently 6 rounds=1/2 of an inch.” I thought I was set.

Here are my results.

1. After knitting 6 more rounds I was at 4.5″.

2. After knitting 12 more rounds, I was at 6″.

3. After knitting an additional 6 rounds, I was at 7.5″.

At which point I decided, “Screw it! I’m just gonna do this however I want!” Which is exactly why I majored in words.

Because, when it all comes down, my training as a language major has given me the only two skills I truly need in order to succeed at knitting:

The ability to interpret things freely and fluidly, and the ability to curse in many different languages.

Normally I have no idea when I started working at any of my ill-fated previous jobs, but this one I will remember for a very long time, because of the special event that marked my first anniversary as a bookseller.

It was not cake, or a party, or a special birthday discount on buying books, but rather the fact that the transsexual with whom I worked finally, after many years, received his long-awaited breast implants.

Lordy Day, did I experience this when I made the mistake of telling anyone who was not me or my doctor that I was taking steroids to help control the agonizing, incapacitating arthritis pain that I was experiencing back in the spring.

I thought I was saying, “Yeah, my doctor gave me some Prednisone to help with the pain,” but apparently what everyone heard was, “I’m currently ingesting a special tonic composed of the leftover radioactive material from the Chernobyl disaster, laced with some accompanying drops of the dark black essence at the pit of Satan’s soul.”

Unfortunately, no one would ever just come out and say, “Hey, I’m concerned that you’re on steroids.” Instead I was regaled with many, many stories involving friends, family members, or someone they’d heard about while standing in line to pay for gas who contracted some kind of illness, stupidly took steroids, then found out that “that was the worst thing they possibly could’ve done,” and now they are crippled/maimed/disease-ridden/comatose/an invalid/dead FOREVER.

The implications in all of these stories were, of course, that a)I was an ignorant, reckless, idiot, who just leaped onto the first treatment plan that caught my attention without actually knowing what I was getting into, b)that I was selfish and inconsiderate for doing something that was clearly upsetting the person I was talking to, c)and that if I were a “good” friend/family member/whatever, I would immediately cease said upsetting action, and instead choose a treatment plan that they were comfortable with. You know, because my illness is all about everyone else.

Give me a fucking break.

It’s not like I just woke up one day and said, “Hm, what can I do that will recklessly endanger my health, as well as freak out the maximum number of people possible? I know-I’ll start using steroids!” I took that medication because I needed it. When it’s your turn to experience such excruciating pain that you can neither move your arms, stand, walk, or even get out of bed, then you can treat it however you want to. But I’m the one who had to live through all this stuff, and this was my choice. So BACK OFF!

Nobody but the sick person knows what they are going through, or what they need to survive. Telling horrifying stories to someone who is barely able to function as it is is just mean, especially when you’re doing it to “punish” them for upsetting you with their choices. Either come out and say what is bothering you, OR KEEP YOUR BIG MOUTH SHUT!

If you’d like an additional perspective on this situation, the awesome Lynne Morrell has written a companion piece to this series which lists things you can do to help someone living with a long-term illness.

And so, without any further ado, I give you Part Three of What Not To Say:

5. Appointing yourselves as our personal Director of Information.

Attention healthy people: On behalf of chronically ill people everywhere, I would like to take this opportunity to tell you to STOP RESEARCHING OUR ILLNESS FOR US!

We have all the information we need, thank you very much.

We know exactly how sick we are. We know what treatment options are available to us. We know all the bad things that can happen as a result of our particular illness, because we are living through them every day. We are working closely with our doctors, and are following the treatment plan that works best for us.

It may not look like it from the outside, because we aren’t doing things exactly the way you would do them, but I promise: we are already doing everything that can be done.

Oh, and while we’re on the subject? Please also stop telling us about all the additional awful illnesses you’ve found that match the symptoms we are having. We already have enough to deal with; we do not have the energy or the resources to worry about something new that, more than likely, WE DO NOT HAVE.

This kind of research may be a nice, intellectual exercise for you, but it just causes massive stress for us. It is also frustrating to be treated as though we have no idea what we’re doing, when we are the ones living with this illness-not you-and all we are ever doing is working to get better.

So please, just keep this information to yourself, because we don’t want it. Otherwise, don’t be surprised when we strangle you with your own computer cables. Because you deserved it.

The Worst Things You Can Say To Someone Dealing With A Long-Term Health Challenge

3. Expecting our recovery to be linear and predictable.

This occurs whenever we’ve experienced a handful of “good” days, and then suddenly go back to feeling bad again.

What you say:

-”Oh no-what happened?”
-”What did you do?”

What we hear:

-”What did you do wrong?”
-”Wow, how’d you fuck this one up?”
“It’s obviously your fault that you’re not feeling better anymore.”

Um, no-it’s not. Healing is messy. Healing is not pretty. Healing does not follow a nice, tidy, predictable path that you can plot on a graph. Healing has no cohesive form. Healing is primal and cuts right down to the bone. Healing brings up all the dark, nasty, unpleasant, icky places-that’s what’s being healed. Healing has its own timetable, and works on its own schedule. Healing doesn’t give a rat’s ass about when you feel you SHOULD BE WELL ALREADY, DAMMIT! Healing just goes right along doing its own thing, often in spite of you.

Having one good day means nothing, except that in that particular moment, we are feeling okay. It is no predictor of anything; there is no ongoing meaning that can be extrapolated from it. It just means that right now, we are feeling good. But there’s not one single thing, good day or not, that will prevent us from feeling utterly miserable in the very next moment. And, once again, that doesn’t mean anything either.

So whenever we’re out there, bashing around, trying this, that, and the other, feeling good, feeling bad, experiencing utter unpredictability, randomness, and chaos, remember: This is what healing looks like. Please don’t attempt to hold us to anything, because right now our lives are in constant flux, from one moment to the next. There is no constant for us right now.

4. Pushing us on

What you say:

-”I really think you’re on the upswing now.”
-”I’m praying for a complete and total recovery/miraculous healing/some other extremely specific outcome for you.”
-”We’re gonna get you back to your old self again really soon.”

What we hear:

-”You need to hurry up and get well.”
-”Where you are right now isn’t good enough.”
-”You need to be somewhere other than where you are right now.”
-”Only this Very Specific Outcome that I have completely detailed in my mind is acceptable for your ‘healing’; nothing else will do.”
-”Your healing has to look a certain way in order to be ‘good enough’.”

Oh my god, this is SO. MUCH. PRESSURE on us. Because, as I might have mentioned once, or twice, or eleventy billion times, we have absolutely no control over this healing process that is taking place inside of us.

We have no idea what anything will look like once we get to the other side of this thing. And feeling like we have to somehow make our healing live up to whatever it is that you’re expecting from us, sometimes just makes us want to stay sick, because that would be a whole lot easier.

We very much appreciate your care and support, but we really need it to come in a form that is much easier, gentler, and more open-ended. Statements like,

-”I’m holding you in the light.”
-”I’m sending you lots of love and healing energy.”

are very gentle, supportive phrases you can offer us, if you are so inspired.

This concludes today’s rant. We now return you to your regularly scheduled day.

The Worst Things You Can Say To Someone Dealing With A Long-Term Health Challenge

Because unfortunately, I’ve had an awful lot of experience in this particular area of late.

And so, in no special order, here we go.

1. “How are you doing/How are you feeling?”

This most likely comes as a surprise to you, because you probably feel it is a sign of your care and concern to ask this question. But speaking on behalf of chronically ill people everywhere, this question just makes us feel worse. And I’ll tell you why.

Because we are shitty. And we are TIRED of having to talk about how shitty we are all the damn time.

So if you know someone who is living with a long-term illness, and you’re ever wondering how they’re doing, DON’T ASK! Instead, just go ahead and assume that they currently fall somewhere along the following Scale Of Shittiness.

10-we wish that we were dead; we don’t understand how someone can continue to be alive while experiencing such excruciatingly unbearable pain

5-able to get dressed and sit up, but not much else

1-able to function at about 50-75% of our pre-illness ability; pain is mostly managed, but still felt; and most likely we are having to deal with some new physical problem (migraines, allergies, infections, etc.) due to our compromised immune system

So remember, when you catch yourself asking us how we’re doing that, even on a “good” day? We’re still shitty, and we’re sick of talking about it. And when we’re not shitty any more, we’ll let you know. Trust us.

2. Asking us to mathematically quantify our illness and recovery for you

What you say:

-”So, did your doctor give you any kind of time line for when you’d be over this?”
-”On a scale of 1-10, where are you today?”
-”In comparison to [some other day], where would you rate this day?”

What we hear:

-”Why aren’t you well yet?”
-”You’re still sick-geez!”
-”What’s wrong with you?”
-”You must be doing it wrong.”
-”Please ’spin’ your process for me in a way that I can understand, and that will make me feel better.”

And, most especially, “It is really upsetting me that you are so sick, because it reminds me that this very same thing could happen to me/that I am totally powerless in this situation. But I don’t want to realize that, so you really need to hurry up and get well so that I can feel better. You need to stop upsetting me by being so sick.”

HELLO! We barely have enough inner reserves to wake up every morning and face the day. We do NOT have the energy to take care of your feelings on top of everything else, nor is it our responsibility to do so. If you’re upset by our illness, then go away and figure out some way to DEAL WITH IT YOURSELF! Our illness is not about you.

That’s probably enough for today. Stay tuned for more on this subject later in the week.

My coach: So, how are you doing?

Me: Not so good. I’m feeling really bad physically.

My coach: What’s up?

Me: Well, I keep thinking that maybe I don’t actually need to keep taking Ibuprofen for my arthritis. So I keep stopping, and then I’m fine for a few days, and then I start to hurt again.

My coach: Why don’t you want to take your medicine?

Me: Because for some reason, I just think that I should not take medicine. Also, I just want this to BE BETTER, DAMMIT!

My coach: Well, isn’t it better when you take your Ibuprofen?

Me: (blows a giant raspberry into the phone)

Well I’m pretty sure that 2007-2008 has been The Season Of Delurking in my body, where every physical issue that was tired of being ignored or avoided decided to show up and demand that I finally deal with it.

So, just ask me how much fun that’s been (Answer: Not so much). But I have really felt lately that I was starting to see the light at the end of The Illness Tunnel. Until I had the following conversation with my friend, Lynne.

Me: And I don’t know why, but lately I’ve been having these “episodes” where I just get really hot all of a sudden, and start to sweat.

Lynne: Hm, I didn’t know that you were in perimenopause.

The earth comes to a screeching halt.

Me: Say what now?

Lynne: What you’re describing? Those are hot flashes. You’re having hot flashes.

Me: Nuh-UH! Shut UP! And also, la-la-la-la-la, I can’t HEAR you!

But once the seed was planted, I could no longer remain blissfully ignorant of what was happening to me. Especially later that evening when my husband and I were both seated in our living room watching television. I noticed that, not only was he covered in a blanket, but he had covered every single bit of exposed skin up to his eyes, which unfortunately he needed in order to view the TV. Meanwhile I was seated next to him, engaged in the same amount of physical activity (none whatsoever), dripping with sweat, and my clothes were damp.

Hm, I thought. As much as I do not want to admit it, Lynne might be onto something here with that whole “hot flash” thing.

So I decided to do a little research.

Me (trying to be casual): Hey, can I ask you a question?

My husband: Okay.

Me: How do you feel right now? Like, what is your body temperature?

My husband (with the fervent emotion of someone finally releasing a torrent of pent-up emotion): I’m SO COLD! This house is FREEZING! Haven’t you noticed that I’ve had to start blanketing my face because it’s so cold in here?!

Me (absolutely dumbfounded): What are you talking about?! It’s SO HOT! Look, I’m sweating and my clothes are damp. Here, FEEL MY PANTS!

“Hm,” said my husband, with the look of someone who has just realized that crossing a woman in the throes of a full-blown hot flash is a lot like poking a big black bear with an electric cattle prod, and turned up the speed on the ceiling fan a couple of notches

So I went to the gynecologist, fully prepared to hear that the stress of my year-long illness had thrown my body into premature menopause, only to be told that, “it’s not hormonal.”

(It’s also not my thyroid, because I’ve had that checked. Twice.)

So I still have no idea what’s going on with me. Best guess is that it’s just my body continuing to recover and realign itself. Meanwhile, I’m pretty sure I could get a job as the sun in a brand new solar system, if I run out of things to do around the house.

That is, if I don’t go super nova first.

The Bad News: Now I know that it is possible for a person to contract the shingles Inside. Their. Ear.