freedom not to choose

I recently had occasion to revisit Christine Miserandino’s excellent essay, The Spoon Theory.  Last night, after literally months of chasing his brother down to make plans for their dad’s 70th birthday, my husband finally had a talk with his brother about said plans.  A real, concrete talk.  This did not go well.  Post talk, my husband and I were sitting on the couch feeling drained, pissed off, sad, and well, just all kinds of bad.

Back up.

My brother in law had wanted to do an all out big hurrah for his dad’s birthday.  Despite my brother in law’s wife being pregnant with twins, a much sought after and difficult to attain pregnancy, he was talking trips to Europe in April.  April would have been four months after the kids were born.  I recall as recently as late last Fall, when his wife was huge with impending kids, he was still talking this nonsense.  “If he goes, if he goes ahead with this plan and leaves her alone with those babies to run off and have a booze and cigar fueled tour of Europe, he may as well pack ALL his shit because it’s gonna be on the curb when he gets home,” I told my husband.

Flash forward a bit, post babies but still winter.  Still months before dad’s birthday.  My brother in law realizes either than he doesn’t have the time or the money to make this trip.  Good.  Finally.  Sense!  But still, let’s go to a resort in the US!  Weekend at Bernies style!

I got sicker.  Brother in law got harder to get in touch with.  The time drew nearer.  His own plans just for his kids’ christening took forever to gel, an event that was roughly scheduled around their dad’s birthday.  Ok, so putting off the birthday event.  Doing it in the summer now.  And maybe more local.  My husband really tried to get together with his brother on this.  I planned to take time off so I wouldn’t need to try to get my sick ass into work on my own and use up a day’s spoons just in my commute.  “Just let me know when!” I said.

Vacation planning time came up at work.  At the time, my husband had only managed to nail his brother down to “it’ll be one of two weekends in July”.  I tried to plan around it, but it was tough.  I had to pick time off and we still didn’t know when it was happening, except that we knew it would involve a weekend.  Ok, so we figured they come in Thursday (and this was discussed with brother in law), go golfing locally Friday day after my husband gets me to work.  Then Saturday they head off to some golfy-area and stay at a hotel Saturday night, golfing all day Saturday and early Sunday.  Drinking, smoking cigars, etc.  Great.

Except that this isn’t what my brother in law “envisioned”.  Notice I didn’t say “planned” because people like him don’t plan.  They can’t be bothered to make the choices that planning entails.  When you are merely envisioning, you can have endless opportunities, possibilities.  When you plan, you will systematically eliminate all but one set of those possibilities, eventually destroying them.  Whole worlds of possibilities are gone when you finally commit to a plan, what is left is only that one potential world which you have committed to trying to attain.  My brother in law cannot handle this process.  He is a dreamy little dreamer, who is in total denial about his dreaminess.  I can handle dreamers who know they have a soft gooey center surrounded by a light flaky crust.  I can’t handle dreamers who think that they live in the real world, who drift through their days fueled by the privilege of not needing to choose, enabled by the people around them to continue to entertain countless, limitless possibilities to the consternation and detriment of anyone near them who actually needs to know what the eff is going on.

Yesterday, my husband sent my brother in law an itinerary.  Oh boy, not a thing to do to a dreamy little dreamer like him.  That got his attention.  Not that he called my husband.  No, my husband still had to cyber-stalk him all day to get a reply.  Finally, they spoke.  Brother in law revealed his massive disappointment in the plan my husband had concocted based on the limited and late input he got from and about my brother in law.  Input like dad telling my husband that brother in law actually wanted to come up Wednesday to Saturday because he had made work travel plans for the following Sunday or Monday.  Again, plans for {this or that}.  Not plans for this.  Or plans for that.   Last night, dreamy dreamer revealed his boozy smokey vision to my husband, communicating that he didn’t think that they should stay here for any part of it because they wanted to kick back, let loose, not worry about me and my problems….<needle scratch> 

Gosh darn it, cripple problems are no fun!

Not that those problems would go away, especially not if he took my husband out of the equation for work days that I now had to work because my brother in law couldn’t be bothered to commit to even planning let alone a plan back when even an outline of a plan would have given me the tools I needed to make my own plans.

This boy who pretends to be a man is one of the people I was thinking of when I wrote about blithering optimists.  And he’s been a source of actual strife for me in my sickness any time the practicalities of his sphere overlaps with mine.  I told my husband last night that they’d better plan to stay somewhere because I don’t want him in my house.  Brother in law has made it clear that if he is forced to stay here, he will either not respect my constraints (like needing to go to sleep, stretch my legs out on the couch, or eat when I need to) or he will respect them but with heaping helpings of resentment and disdain.  I don’t need that shit.  Apparently I can’t keep it out of my life, but I can keep it out of my home.

For a while now, I’ve been thinking of writing a “dear family and friends” letter.  My previous attempts at a narrative have ended up in 5 page single spaced .5 margin word documents that still are incomplete.  But those didn’t have a purpose other than cataloging, chronicling my illness.  I realize I’d have  to think about the point of this, because if it’s to communicate to friends and family what it’s like, if it’s to help manage their expectations in advance, then I need to be aware that there are people like my brother in law for whom it may just not matter anyhow.  We stand at opposite poles of the planning continuum and unlike Christine’s friend in her essay, my brother in law has not asked what it’s like for me to live like this and may not give a crap.  So if I do write this, I will write it with that audience in mind, with him standing in for all the not giving a shit people in my life.  And I will assume that if I choose to write it, it will be at least as much an exercise for myself as it is a letter to them.

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  1. Ooohhhh, good one! Love the vids–had a flash back there. Boy, BIL (for short) sounds like a real schmuck. Dreamy dreamers just can’t function in real life, period. How does he even have a job? They’re the type that if you need something (like here), you have to ask 100 times, then e-mail/text, put a sticky note on their forehead and you still will get it a month too late. Totally know the type and they make me insane (as I write my to do lists with my wide-tip Sharpie pen every day!!!).

    I’ve sent e-mails to my family before that fell on deaf ears. My former BFFs “couldn’t deal with it,” even though I never discussed my health and lived out-of-state. Odd? May I suggest 2 letters? 1 for the people who may get it like in The Spoon Theory and 1 for those like BIL that will shake their stupid little heads and throw it in the trash. That way you get a partial win, if you have that group that will get it (sure wish I did). Otherwise, it’s like setting yourself up for disappointment as I know you’ll spend a lot of time on that letter and then plop. Just a thought.

    OK, think I commented 10 times today so will give you a rest for a while and we have the scary oncology appt. on Wed. (CCR is playing again) and I have to get up at 8 am (what?) 😉

    • We use wide tip sharpies in the office for our students with low vision, so I always think of our big sharpie cup when you mention it. We also tell faculty to use sharpies for comments on paper assignments, although computer is better. It gets tiring reading so much handwriting and a lot of our students switch to audio when they have more than a little reading to do.

      Hm, the two letter idea is a good one. My husband wrote a really good one for his brother actually. His summary of what’s been going on since January was amazing. Comprehensive without rambling.

      Rest up for your vet visit. I will be thinking of you.

      • Thanks. I have the need to empty the inbox if I can and then blow up yours–yikes.
        Glad Husband wrote a letter and funny that I figured out that Sharpie thing on my own. I hope one day I can get up at a normal hour (sleep is so bad right now–trying new med and all weird) and see soon with my scleral lenses (get those next week) b/c there’s a blind center here (low vision people, too) and that would be a great place to TRY to volunteer at since at least I can relate. I’d go myself if I could get up and get a ride! It’s amazing that I didn’t realize so many people had low vision or no vision until it happened to me. I really hope you don’t lose your job since you do such great things for the students there. Fingers crossed…

      • If I remember correctly, one of my students said there’s a really good center for blindness/low vision in your state. He was not a fan of California’s resources though. It came up when my (other) BIL from CA got super sick and his vision just went, like POOF. BIL’s vision’s gotten a lot better, but it was down to only directly in front of his face and high contrast for about half a year. Shocking and scary, as you know. Anyhow, I think working at the center would be great! I hope it’s something that can happen for you. The student who offers me all this info has some vision, but so little that he is technically blind. He’s off at some summer-long training right now, I’m sure he’s going to come back with some great tips.

        New meds. Blurgh. I’m wondering if the Reglan is giving me these crazy dreams. Well, making them extra crazy, I mean.

        I hope I keep my job too. I like what I do and I’m one of the only people who does it. Usually, it’s a job done by someone in addition to their other job, or done by several someones. Hard to keep things in order that way. I know I do it well too. 🙂

      • It may be the only good thing in my state. Argh, Glad the student you work with is in a better spot and your students will be at a loss w/o you–that’s nice that they just divide the job up that way–rather typical I’d say.

        I haven’t tried new meds for my pain in 6 yrs or so. I forgot I even mentioned it! I told the doc I wanted a liquid of nortriptyllne (back to that), as it did lower my pain more than doxepin but the side-effects (maybe at 25 mg?) were too much. I tried desipramine last month and no benefit and side-effects at 2.5 mg! So, I’m still playing with this one. I got better pain relief at 5 mg, but also got the typical anti-cholinergic side-effects and horrid night sweats–odd one. Back at 2.5 mg and I can tolerate it it seems, but not sure if it’s any better, especially as it’s monsooning and I feel like CRAP!!! My muscle pain just gets beyond bad–yesterday was the worse with no sleep, as well. Anyway, I wouldn’t discount the idea that the freaky dream(s) are from a drug–I get the weirdest things in the world from meds. I wonder if other EDSers are super sensitive to them–this was such a fibro thing (refuse to even think I have both!).

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