It Was My Mother


Yeah, it was my mother who blew off my birthday.

Does that change anything?

And the person she trashed me to was one of my kids.

I called her house last night to speak to my grandma, but didn’t bring up the birthday issue cuz I was waiting to see what you guys would say. We ended up talking for about an hour about this and that, and she of course acted like everything was fine.

I’m the firstborn, and she isn’t senile, so it’s not like this is something that would have just slipped her mind.

I want this not to be something that is painful for me, but it obviously is, which is why I’m writing about it on the blog.

Her phone hasn’t been broken, she has sent texts to my kids, and she mailed a card to one of them a few days ago, so it’s not like she didn’t have stamps or couldn’t get to the post office. I keep trying to find a way to make this something palatable, but the truth is that it’s just ugly and mean.

When do we get old enough to not care what our parents think or do?


I want to be the person who glories in the fact that people I never met on my blog care enough to wish me a happy birthday, that my husband and kids are around and they are who matter, and that I have friends who would be there for me in a nano-second if I needed them. But instead I feel like a failure that I am letting myself be dragged down by someone who obviously has issues of her own that she would be so cruel and passive-aggressive (no, the birthday thing was not an isolated incident, but this has been the most recent and flagrant).

So now that you have more info, would you change your answer? Would you give me more or different advice? And please someone tell me how I can stop feeling so broken just because I am attached to a broken situation.

Unhappy Birthday to Me


Remember a dozen or so posts back when I said maybe I should check in with you guys before I made any major decisions? Well here is your chance to weigh in on a rather big one.

My birthday recently passed and someone who should be very central to my life failed to acknowledge it in any way. I am not usually one to stand on ceremony about this type of thing; I don’t do Mother’s Day (except to call my own mother and grandmother) and birthdays in our house mean that the luckily-born person gets to choose what we eat for supper that night. We don’t go in for a lot of hoopla and I’m not a mushy-gushy sentimental type. Whoever said that diamonds are a girl’s best friend was not my friend, and people who think you need a tchotchke to commemorate every occasion have no idea how much more I value clear space over clutter. So in general I could do without sentiment when it comes to Hallmark holidays.

But you know how everyone has that certain inner-circle of people who knows your special days and your important milestones and is supposed to at least check in from time to time to let you know you are thought about? So this was one of those people and this person let my birthday pass without a phone call, email, text, card, or acknowledgment of any sort. Officially there is nothing wrong in this relationship, although this person’s actions would say otherwise to me. So here is my question:

Is it worth me calling to ask what happened? Is it better to just make an excuse (which I will know in my heart isn’t true, so it won’t honestly give me peace) and let the other person save face and continue to bear whatever grudge they have and act like everything is fine on the surface and just know that this person obviously wants to passive-aggressively get back at me for something? It isn’t viable to say they forgot, since other people in the same circle didn’t forget, and would have mentioned it. Also, in the interest of full disclosure, this person said something really nasty about me to a third party a few weeks back, but whenever I have asked if there is anything we need to talk about to clear the air, this person totally acts like I’m crazy to even ask.

So my question that I would very much like you to help me sort out is, do I confront or cut my losses?

What are the pros and cons as far as you can see in terms of calling or not calling? The times I sometimes make the worst decisions are the times I am closest to the fire, so this is prime blow-up territory… So, in the interest of having my back, what do you think?

Things It May Be Hard For People To Understand If They Don’t Have A Chronic Illness


1) Although our lives are full of doctors and pills, we don’t fully believe in the curative powers of medicine;

2) Sometimes we can be too fatigued to do things like bathe or brush our teeth, although to a well person those things seem to take no effort at all;

3) We may at times wish we were dead, but that doesn’t mean we want to kill ourselves or that we are suicidal. They aren’t the same thing;

4) If we act sick, we are drama queens, basket cases, or worse. If we endure in silence we are closed off and shut down. So we are in a lose-lose place when it comes to telling you how we feel. And since there is no accurate language to describe pain or feeling unwell, we know you won’t understand anyway;

5) We are the best experts on our health conditions, so if we tell you we need a sweater when it’s 86 degrees or that the lighting in Costco causes us vertigo or that the smell of violets nauseates us or that only a certain brand of vanilla ice cream soothes our stomach- it may all be confounding to you, but we come by this knowledge the hard way, so please believe us. (The corollary to this is that, if you are chronically ill and you complain about nonsense or milk your condition for pity when you need other things or make up symptoms to get attention, you delegitimize the rest of us and make it that much harder for us to be taken seriously. So, please, think twice before you decide to go big with a minor annoyance- chronic illness is not a permission slip to be a whiner or to have shoddy communication skills…);

6) Just because we suffer, it does not make us more noble. It just makes us know how to suffer. We don’t have any special life wisdom; we just know a lot about hospital bureaucracy and medical terminology. This can be a very big let-down to non-sick people, so let me apologize on behalf of all of us for disappointing you;

7) We are still people. So it still bothers us if our new medication makes us gain 80 pounds or lose our hair or get bad breath. Yes, we wish we could rise above it in the quest to be well, but really, we struggle- just like you would if it happened to you (see #6);

8) We do have good days and bad days (or better days and worse days), just like anyone else. But that doesn’t mean our illness goes away. It is always in the back of our minds, always governing what we can and can’t do, always waiting to swoop in and steal our fun. So even our good days have a dark shadow in the background. We live with that the best we can, and some of us do a better job than others;

9) When we tell you something you can assume we are honest. Most of us have stories that are counter-intuitive to non-sick people, about hospital mix-ups or drug side effects, or conversations we have had (yes, I did spend 3 hours on the phone with my insurance company). Even if you have to suspend your disbelief, our universe is as real to us as yours is to you. It’s just that the rules are more topsy turvy;

10) We still want to be a part of the world, as much as we are able. So please don’t exclude us or assume we would rather be alone. By default, we spend a lot of our time crashed out, but that doesn’t mean we still don’t want to feel wanted. There is a fair chance we will say no, but that is no reflection on our desire to spend time with you. A lot of the time we just feel cruddy. But please keep trying (on the other hand, please never subject us to a campaign to make us feel better by “getting us out of the house” or any other missionarily zealous thing. If you think your friend is too isolated, go visit. Preferably bring ice cream. If you think your favorite sicky needs more fresh air, forego the outing and ask if you can open a window. Just like you wouldn’t want the sick person to manage your life for you, we probably don’t need you to manage ours. We are sick, not infants. I once had a well-intentioned person defrost an entire freezer’s worth of food for me- on the theory that it would give me just the right push to get up and start cooking. That would have been great if I was suffering from a lack of motivation and not an actual illness. Let’s just say it was a bad move and it wasted a lot of food. It was about a decade ago and it still irritates me when I think about it today. Get the drift?). Anyhow, please keep including us, and don’t take our lack of participation as a gauge of our feelings toward you. As with all things both sick and un-sick, if you are unclear, ask. It’s always better to be safe than confused. Now go forth in clarity :)

Don’t Ask, Don’t Tell


Spoiler alert: if you googled this title for information about homosexuals in the military, you have come to the wrong place.

If, however, you are here to read what in the world I would possibly say that could be connected to this topic, then get comfy and read on…

As someone who has a blog because people once knew who I was, I am in a somewhat more awkward position than other bloggers. Not to seem like I am flattering myself, but whereas some bloggers are just personas in cyberspace, I am kind of “out” as who I really am. There is no hiding behind a blog identity. I’m not Julie Bass in real life and FatMama22 online. I’m not Blog-Chick-Blow-Your-Mind in cyberspace and then me at the grocery store. I’m me 24/7, which is cool with me cuz I’m a pretty what-you-see-is-what-you-get kind of person.


Except that some of what I talk about involves my family. And some of what I talk about involves (I have been told) very private health stuff. Some of what I discuss here is cringe-y and some of it is controversial and some of it is borderline weird (depending on who you are, I guess).

So in an ideal world there should be a balancing act of some sort between what goes on in my life and what I write about on the blog. And in actual fact, there is plenty that for one reason or another I do not write about (although believe me, I chomp at the bit to write it!). The trick is in deciding how much I should disclose.

Now that I am kind of cascading into becoming a chronic illness blog (or a chronic complaining blog, depending on the day and on your point of view), this trick is even more tricky. Obviously (to anyone who really knows me at least, since they know I am a super prude) I am not going to discuss gross invasive tests or very intimate problems. But one girl’s interesting blog post is another person’s breaking point. What I think is thought-provoking is has actually provoked the thought that people can’t believe I said that in a public forum. And there is a fine line between pushing the envelope and pushing people over the edge (especially troubling when those people happen to be your loved ones).

What is head-spinning to me is that I really don’t try to be edgy. I write from my heart, and I say things for a purpose- either to process something I need clarity about or to try to help other people. I am not a shock-gets-readers kind of person, and it’s not like I’m using words that would turn up in a search if someone wanted shock value anyway.

Maybe I just have crazy strange boundaries, but it really doesn’t bother me if people know about my pain and how much time I spend in bed. When I wrote the post about suicide crossing my mind (not about being suicidal, just to clarify, so nobody needs to freak out again) I was sincere and not embarrassed- but was told repeatedly that I should have been and that I had no business at all posting something like that. It was suggested I was a bad mother for writing something that my kids could find online one day and I was ratted out to friends for being so unstable. When I explained repeatedly the reasons for the post, it fell on deaf ears and made me feel like maybe I really was crazy.

But I want to keep blogging and I want to keep being authentic.

I feel like this is one thing that I have done from the beginning on this blog. This is my voice, and whether I have been writing about the garden or our move to Seattle or about my health, I have always been real about it and that’s the bottom line. Sometimes I self-censor and sometimes maybe I say too much, but I am always struggling to get the balance right.

Going forward I will probably make more mistakes. Talking about my health is a dicey thing, and other people with chronic illness blogs struggle too with how much to disclose. Truthfully, this is all new territory for me, and since my life is not all illness all the time (thank goodness) I’m sure I will still prattle on about other stuff as well :)

Meanwhile, I hope you will all be patient with me as I figure out the right balance between what is compelling and what is just too much. I hope you will give me feedback on what you find interesting and what you find repetitive or just plain boring. I hope you will let me know if there is something you think I could be doing better- after all, I wouldn’t have a blog (okay, I wouldn’t have a cool blog) if it weren’t for all of you reading it…

Bottom line: I think I’m probably gonna keep on being me, so consider yourself duly warned. But I do hope you enjoy the ride :)

What I Meant To Say


One of the great things about blogging is that you can have as many tries as you want to say what you trying to say. Unlike in real life, where you botch stuff and make faux pas and humiliate yourself (or others- which is worse, I wonder???), on a blog you can type and retype and edit and erase to your imperfect heart’s content. It is even possible to delete entire posts, and although they theoretically still exist somewhere out in cyberspace, I at least feel the same sense of satisfaction as I do when I hang up on a particularly cantankerous phone caller. Click: you’re gone.

In the last post I wanted to express my own frustration with people trying to define me in terms of what I do, but I think it is a much larger issue. As a society, we have gotten so used to equating a person with their profession that it doesn’t even seem odd to us that: A)often the first question we are asked when someone meets us is, “So what do you do?”; B)we expect that telling someone what we do will accurately convey pertinent information about who we are as a person; C)what we do is even relevant at all.

And in truth, for many people what they do IS who they are. If you are a corporate lawyer, you may dress the part, drive a certain car, and adopt certain mannerisms even outside of the office because so much of your identity is wrapped up in Corporate Lawyerism. I have seen teachers, and frankly it is only teachers, wear those cardigans with the apples and rulers and ABCs/123s on them- when they are not teaching and not in school… When someone asks, “What do you DO?” The answer is, “I AM a _________________” and not, “I DO _________________________.” Isn’t that interesting?

But that shortchanges both the asker and the answerer. If I want to know who you are it doesn’t help me to know that you practice dentistry. If you want to know who I am, it doesn’t give you any particular insight to know that I stuff envelopes or write a blog or do laundry.

I think many of us equate who we are with what we produce in the world, or what we are paid to do because we often don’t give much thought to who we are. Whether because that is too painful or too deep or too vast to contemplate, we spend lots of time doing and very little time pondering. It’s not that I am not guilty of this very same thing; in fact, I am one of the gravest offenders. I so abhor quiet reflection that if I am ever in a peaceful house I will put on the AM radio just so I can have background noise as a distraction so I don’t have to be alone with myself.

For me, this is partly because I don’t like looking at that huge space that exists between who I am and who I wish I was. I am not just talking about the limitations of my illness. In fact, I am not talking at all about the limitations of my illness. Although it is tempting to blame my shortcomings on how cruddy I feel on a regular basis, and I could probably make a rather convincing argument for why that may be true, if I am speaking from a position of pure truth I would have to say I have just let myself off the hook about certain things. I have let myself not be accountable (to myself, since in these things nobody else counts), and so I have become not the person I would aspire to be but instead the person I really am.

And that’s more than a little painful.

So if I worked and someone asked me about myself, I would definitely rather tell them I was an accountant or a grave-digger than that I was a fallible human with so-so character who should probably work much harder to be better but most of the time just can’t be bothered. It’s much easier to say who I look like to others (meaning what I do) than to talk about who I am.

Oddly enough, though, this is a game that both sides play. Because lots of people who ask about me don’t want to know me at all. They want a cursory answer to a cursory question, and in most contexts that’s fine. I don’t need to tell someone I am meeting casually and will never see again the complete saga of my life story. Nor do I likely want to hear theirs. It’s like the social nicety of saying, “How are you?”, to which the only acceptable answer is, “Fine.”. Anything else is almost unbearably boorish. I think both sides understand how this transaction is supposed to work, and as long as you play by the rules, it’s no harm, no foul.

But when you don’t have a job to fall back on, society sort of breaks down on you. If you meet someone- which may sometimes happen, even if you mostly stay at home like I do- and they want to do the social shmooze with you, “So, what do you do?” within 5 minutes of meeting you, you are already at an impasse. I guarantee you that this person does not want to hear that: A) I vomit. A lot; B) I lay in bed. A lot; C) I do laundry and cook and clean, when I’m able. Are you enthralled yet? Neither are they…

Last time this happened I decided to change things up a bit, so I said, “I do nothing,” to which she replied, “Oh,” and quickly looked around for possible escape routes. Seeing none she stammered and sputtered and I realized it was probably my turn and I should pretend to be civilized so I asked her some inane question and she was delighted to chatter on and on about who-knows-what.

When my doctor asked me, for the zillionth time, about how I spend my days, and told me how not being more productive is giving in to the pain, and blah blah blah, I broke it down for her like this: “I may not be a corporate executive, but I am a Corporate Mommy. Every day I run my house to the best of my ability. I manage my staff and my resources and do my job. I’m in charge of the budget and the inventory and the supplies. So just because my job doesn’t have a box I can tick on your form, it doesn’t mean I’m not competent…” I saw her smile as she made a note in my chart, so mission accomplished.

As I was thinking about directions for this post (making supper in the middle of writing- and you didn’t even notice I was gone, did you?), I was wondering really who I was. All of the labels I came up with weren’t quite authentic. Mother: only defines me by what I do for others. Wife: only defines me by who I am legally obligated to. Homemaker: job title that I feel like anyway is a way to legitimize what I do by making it sound like a “real” job, when in fact it shouldn’t need to be legitimized at all. And the rest are even more of a stretch: friend, blogger, Roman, Countryman- lend me an adjective! All are tangential things and none are ME.

I know who I am at my core, and maybe that’s most important. For each of us, I think it’s time we saw who we are and what we need to do to be who we want to be. It’s time to make our insides congruent with our outsides; let’s face it, none of us knows how much time we have left. So I guess the real work of our lives is to live the most wonderful life we can with the resources we have been given.

Maybe the best answer to, “What do you do?” would be, “I try my hardest to be the purest version of myself.”

I wish you luck on your journey.

So What Do you Do? A Peek Behind The Curtain


A few days ago I tried to write a post in the throes of a migraine, which I didn’t judge to be especially bad. I had to stop writing when the icepick in my head became too severe to see clearly, and I couldn’t sit upright (or anything approximating upright) any longer. The next day, I was more than a bit horrified when I opened this draft and started to correct the errors, since the post looked more like a herd of wildlife had stampeded across my keyboard than like an actual sentient being had set out to say something intelligible. After about 10 minutes of correcting, I stopped, too demoralized and headache-y to try to decipher any more of what I had written.

Tonight I had an idea. Rather than trying to finish cleaning up the post, and rather than complete it- as astoundingly poignant as my thoughts on the topic would be for you to read- I thought it might be even more interesting for you to get a glimpse of my brain on migraine. In fairness, this has already been prettied up quite a bit, and this was attempted on a day when I thought I was well enough to write in the first place- already a level of functionality above a truly “bad” day for me.

But here, for your reading enjoyment (if you are a masochistic type), is the draft of the beginning of the post (cringe with me, not at me):

I loove this question, which pervaades socoity, but is especially poignant and painful w? ith ou painful with cdhow o ouine y defunic pain follks: “So what do you do?” Meaninng ” ” rrself? How are you really?oua e re hehniverse/?”
What is your placeisn t

And if your aree chronciab;y ill, the ansewwer is ? ” Nothing.”

I am nothing . I do nthing. I feel liek nothing, ki contirid\bet nkting. I am worth notinhngs. In a world complromprised f doers ond achieverers, the chronicalyy ill ar faillers. We do notiing. We survivalle- a hurcuxculean feat, but one that doesn’t garner a paycjhjeck or earn an award. It earns no acccolades and gets ni props. Sure, it keeps you out ofn hospital, on a good day, but even that is truly beyond your beyond your control- and even it is wasn’t , it hardly makes for scintiliattining cocktail tallk.

So, wat do I do? I can tell yo uwhat I usedd to do. I can tel you what I wish I did. But what i reve allly do is rpretty boring. Why this is the this the getting to koow-you-question is beynd me, but it eliably is. So what is the right answer?

Sometimes I make up stuff. Smetimes I tell peple what I couldd have b een. Sometimes I am honest adn I say I d nothng. That is sure a buzz kill, but it’s also my kind of my kinnd of in-yor-fec- answwer. Like if you wabt to aske me a stupid run-of-the-mill question I will give you such an honest unexpected answer that youwon’t know what to do what to dowith it. Conversation over. Becausee you obviously weren’t ansking a qesuion you wanted to know an answer to anyway.

Shame: The Gift That Keeps On Giving


I have been all over the chronic pain/illness blogs during the last few days, and one theme keeps emerging. Interestingly, it is a theme that I have been tangling with in my real life as well. That theme is the shame attached to being sick.

In my case, the hit is twofold. Not only am I sick, but I have chosen to talk about it publicly. Not only have I done the, “Oh poor me, I feel so sick so much of the time,” thing- which by the way is totally legit and by the way I don’t fault anybody for when, in fact, they do feel so sick so much of the time- but I have also blogged more recently about the dark underbelly of being chronically ill. I have laid it bare, and it is unbelievable- even to me- how unpalatable some people find that truth.

Even *h, who lives this life on a daily basis, was so horrified by what I put out into the public domain that if I tried to express it in words it would be like comparing the Titanic to an inflatable pool toy. Yeah, it was that bad. Sorry, *h.

What is a bit mind-bending to me is how all of us sickies have bought into the idea that we SHOULD feel a sense of shame for being sick. We already feel physically bad, but then we take it upon ourselves to feel guilty and horrible for being sick in the first place. Not only are we constantly apologizing for the fallout from us being sick- cancelled appointments, broken commitments, underperforming, etc.- but then we heap shame on top of it and feel like we have to apologize for feeling poorly in the first place.

We feel guilty for not finding the right doctor, the right treatment, the right therapy- as if a miracle cure is just right around the corner playing a child’s game of hide-and-seek and if only we would look hard enough we could win the game. But chronic illness doesn’t play by the same rules as acute illnesses like strep throat. It isn’t one of those things where you can take a course of antibiotics and get better, and if those antibiotics somehow defy expectations and don’t work you can just take a different one. We don’t have a broken bone you can set and leave to mend. We are unmendable. And it’s often easier for our loved ones to blame us for not trying hard enough to get well than to lose faith in the medical establishment. Because if they believe the blame lies with us for not getting better then they can also believe the power lies within us to get well.

But chronic illness is not such a tidy package. So we feel ashamed that we carry this taint. We are marked by the scarlet I. Every time we repeat our medical history we have to either be apologetic or defensive. When doctors incredulously ask us which medicines we’ve been on we look like drug seekers or hypochondriacs. Believe me, we’ve wondered whether we are too. And we often feel as ashamed as you are willing to make us feel about being on all those meds.

When good Samaritans offer well-meaning advice some people with a chronic illness feel attacked and overwhelmed. They feel like they have to devote their already paltry resources (of time, money, and energy) to pursuing those ideas, however tenuous they may be, just so they can honestly say yes, they have tried an all-yogurt diet; yes, they have tried hanging upside down to sleep; yes, they have tried hyperbaric oxygen treatments; yes, they have tried holding a séance in their bedroom… Some of this they may even believe could hold out some hope for them- after all, your cousin’s neighbor’s best friend’s dog groomer got TOTALLY CURED by doing this thing! But mostly they feel beaten down that they are still sick and ashamed that they are slackers who have not, in fact, tried every single thing in order to get better, which does, in fact, imply that maybe they want to stay sick. Right?

Wrong. This may come as a big shock to some people, so I will say it here first: sick people don’t want to be sick. Unless they have a mental problem (I am not making fun, I am just saying that some people with other types of problems may want to feign or prolong an illness but that’s beyond the scope of what I’m talking about here), people want to feel better. Having a sick day here and there to lay in bed and watch a movie might be a really relaxing break from the daily grind, and you may think from time to time that we have it easy. Trust me- you would never ever on your worst day want to trade places with us. And trust me, we are ashamed that we know you have these feelings. Especially those of us who have “invisible” illnesses, and who look okay on the outside, have incredible guilt that we are not able to function like the world thinks we should. We wish we could pull it together and get or hold or do better at a job. We wish we could socialize more (or at all). We wish we could __________________________________________ (please fill in whatever it is that you want us to be doing and we aren’t, because I’m sure it’s something we feel guilty about and just because you don’t say it doesn’t mean we don’t know it).

What has surprised me lately is that what is worse than suffering is talking about suffering. People are curious about things, but only to a point. If you violate the unspoken social contract and give Too Much Information, you will be shamed.

I should insert a caveat here and say that I have been on the other end of TMI conversations, and they are ugly things. There are definitely things I do not want to know about you, your spouse, your friends, or anyone else. And once something is said it can’t be unsaid. There was a woman in Detroit who used to tell people, “Everything you say has to be true, but not everything that’s true has to be said.” Great, huh?

My beef is with the boundaries of what should be shameful to talk about. One of the blogs I found yesterday was this one: It’s a pity he is taking a break from blogging, because I love his honesty. An entry on his site has a picture of a woman in a bikini (did I just drive up his traffic by a gazillion percent?) wearing an ostomy bag (he calls it an appliance) (did I just drive his traffic back down?). He speaks truthfully as someone with such an appliance about the struggle to have it not be a shameful thing. I love his courage. I am probably one of the most prudish people you would ever meet, but things like that should absolutely not be shameful to talk about.

I know that most of you didn’t come to this blog to read about the life of some sick lady in Seattle. I really want to thank you for sticking with me through so many trials and tribulations. I feel like I have been uniquely blessed in that I can articulate things that other people sometimes can’t. And so if I am going through something that I feel like other people can learn from, I want to put it out there. I’m sorry if it pushes the boundaries of propriety at times, and I’m sorry if it makes you cringe. This is my real life and I try to live it with integrity, even if that means sometimes I make the wrong decisions. What I really hope is that by me talking about what I struggle with I can give someone else out there the courage to say, “oh, me too…” and to help them feel less alone. I hope that by me standing up and taking the hits, maybe you won’t have to. Because once someone else has said it in public, it demystifies things and opens up a dialogue. So you don’t have to be ashamed. You are not alone.

You are not alone.

You are not alone.

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