It’s your own sweet self with whom you must rendezvous.*

I spent a lot of time yesterday making lists. Making lists is one of my specialties; I can make a list for any occasion, discussion, event or job - and often do. Yesterday's lists wound up being twelve pages worth of flowcharts and sub-sections, due dates and color-coded keys.

The reason I started making the lists was that I was feeling completely overwhelmed: No matter what I went to do - everything from putting my clothes away to finishing up scrapbook pages had an additional twelve steps that needed to get done before I could even attempt it. Something as seemingly simple as sewing a button onto my winter coat began an unending domino effect of "find the damn needles and thread -> which are still in a box in the cellar somewhere -> I have to get down cellar to go through the boxes till I can find it, but there's snow outside and I have to go outside to get down cellar, which means I can't get downstairs -> so instead just ask someone else to look for the boxes -> but everyone else is doing their own thing already, so now I have to wait for them to have time -> now they are in the cellar, but they can't find the sewing box with the black thread, will pink work -> decide whether or not pink will work on my black wool coat -> Figure that it's not worth it, and continue to go around with an unbuttonable coat in freezing temperatures."

It was all kinds of ridiculous.

So I sat down and started making very detailed lists of all the things that need to happen, according to my full-to-the-brim brain box, relatively soon. Some of the goals were pretty simple, like Stitch the Names on the Christmas Stockings which I have been promising to do for the past three years, but forget as soon as the stockings get packed away with all the other Christmas stuff. This year, I put them in my craft pile, AND they are on my list, so they at least have a shot at getting done. Other simpler tasks include the aforementioned Button Sewing, Putting Pictures on a Camera Card for my mom's digital frame, Hanging up my 2011 Calendar (only 18 days or so late!), and finally get somebody to help me Arrange the Top Shelves of the Bookcases in the Library.

Other goals were more abstract like Have a Comfortable, Usable Bedroom and Be a Better Friend/Family Member, which includes steps like "setting a reminder to make weekly phone calls to people" (because I hate making phone calls, but don't mind it once I'm on the actual phone), and "finally respond to e-mails from three weeks ago". And still other goals are 1000 stepped behemoths that begin with things like "set aside a few hours a week" and end, forty-five arrow lengths later at An Uncluttered and Sensibly Organized Storage Area In The Cellar or Finally Stop Living Out of Boxes .

There are goals that I have to physically do (Call and Make Appointments with Lynne, Zack, and Neurologist ) and goals that rely more on me finally making decisions ( Start Taking New Prescriptions or Call and Say You Don't Want To ). There are goals that have a lot of steps missing, because I am not sure of how to fill them in, most importantly Feel Better and Have Less Pain, but even with out all the intermediate steps, I have starting points for most of these things, something to do or decide or think about that will help me make the next steps.

I didn't realize until I was about 3/4 (and 3 hours) into the process that some of these goals seemed an awful lot like what could be considered New Years Resolutions, even though that certainly was not my goal. Maybe it was the time of year that had so much busyness buzzing around in my brain, but I just needed to get some of it down on paper, get some of it in a place where I could say "Ok, I know that needs to get done, so now I can stop worrying about forgetting it, or never getting to it: It's there, and I'll get to it when I can, one step at a time." And as I was writing the list, and breaking these huge all-encompassing objectives down into their smallest pieces, it made me realize that there were things that I could actually be doing to help me achieve these things. I wouldn't say it made everything less overwhelming (because, hello: please see 12 pages of color-coded lists ), but it certainly made a lot of the stuff seem more doable.

I can't Get all of Last Year's Pictures into Photo Albums today, but I can "label and date a few packages", or "figure out where the extra albums are living". I'm not going to immediately Make Money Selling Extra Stuff , but I can constantly be "weeding out boxes into four piles: Keep Trash Donate and Sell" as I go through them.

And yes, this is not a revolutionary new system of achieving goals that I have created (because if it was, I would please to like my genius check now, thank you), but the same advice those "experts" on tv or in magazines have been giving since they became experts - Break things into managable chunks, or you won't bother doing them. It supposedly works for losing weight, for being organized, for "living the life you deserve," for whatever. I don't know how well it will work for me, in the long run, because I just made my damn lists yesterday, but I will say that it's helped me to think about where I want to wind up, and what kinds of things I can do NOW to help me get there, eventually, someday.

And if there were more blank spaces on the charts then I would have liked (for example, between "talk to Zack" and "start taking wonder drug that fixes everything"), then those are just a part of life - and especially a part of living with chronic illnesses - and I can deal with them when I get there. It's the knowing that I'm in charge of something even if it is as small as "write records request form for Specialist X", that gives me hope, and a sense of control. I might not have any choices about some of the things I have to deal with (hello: Hives; Parents who drink to excess; Living in a house with stairs), but there are still some choices that are only mine to make, and that feels - if totally overwhelming - still pretty damn good.

*Last week's Dear Sugar column

"Let the world know you as you are, not as you think you should be, because sooner or later, if you are posing, you will forget the pose, and then...

... where are you?" ~Fanny Brice

Day 22: Something you wish you hadn't done in your life

I don't know if it's just a local thing, but here in the Boston area, we have a store called Filene's, which gave birth to a bargain version of the store, Filene's Basement. (Or we used to - it's since gone into bankruptcy and they closed a ton of the stores.) I think most people (around here, anyways) know it best because of their annual Running of the Brides extravaganza, where hundreds of designer gowns are sold at deep discounts for one day only, causing local brides to sleep outside and stampede into the stores. Back when I was in high school, they also had a much less advertised, one day only sale on prom gowns, where every gown was $50-90. (Which, even 10+ years ago, was pretty cheap for a prom dress around here.)

The first year I was old enough to go to a prom was sophomore year, when we had a semi-formal. My mom had been searching the newspaper for the advertisement, finally saw that it was scheduled for the next Saturday, and woke up ridiculously early to drive me and my best friend Ann-Marie the 25 or so minutes away to our nearest store. There were a few mothers and daughters sitting in cars waiting, like us, but the line wasn't horrible, and there was no stampede. We both managed to find fabulous dresses in a relatively short amount of time, and then my mom took us out for breakfast.

Junior year, I never made it to the dress-buying stage, because I got really sick right before prom, and wasn't able to go. (Although I did have a date, with a boy who turned into a real prick when I told him I couldn't go, but whatever - I stayed home with pneumonia, watching a Star Wars (pre-prequel) marathon instead, and I see on Facebook that that boy has since had some "legal" troubles.)

By the time my Senior prom rolled around, I was determined to go: I had already missed out on a lot of "normal" high school experiences because of my illness, and I really was set on going. I was partially home tutored and so was absent from most of the social aspects of school, like lunches and clubs and such, and I saw the prom as really my last shot at being a normal teenager.

I was going to go by myself, like I'd done as a sophomore, but one of my girlfriends started talking to a mutual guy friend of ours and she decided that we would go together. Since I'd literally gone to school with him since Kindergarten, and he knew I wouldn't really be able to dance or anything, we were fine to go together as friends.

When the day of the sale came, I managed to find two dresses that I loved: a black and pink Audrey Hepburn-ish number, with a high collar and a ballgown's bottom and a sweetheart necked, all black dress with a little rhinestone bling right on the front. We wound up taking them both home, even though, at nearly $100, I knew I'd have to return one of them. I tried those two dresses on, almost daily, for weeks, trying to decide. They hung on the back of my door and I would try to picture myself at the prom, wearing one or the other of them, trying to figure out which I should keep.

The all black dress was great: I felt fancy and skinny and gorgeous in it.

But the pink and black? I loved it. I loved it because it was different, because it felt elegant and classy and classic. Because it was totally unlike anything I'd ever seen before, and definitely unlike anything I'd ever worn before.

You have to keep in mind that I barely ever worn anything other than sweats or jeans to school. I didn't wear make up or have the energy to do my hair for 45 minutes like all of the rest of the girls - the little umph that I had had to last me through the two required classes I had left to take, and then I would come home and collapse in bed. I was never fancy or fashionable, and it seemed to me - even now, but especially then - that in one of the many classes I was missing, they must have been teaching all those girls how to do their hair and makeup or how to put outfits and shoes and whatever together, because I never picked up those skills. Those are things that I am - to my younger sisters' dismay - horrible at. I wore what was easy, what was comfortable, and never understood fashion or how it was supposed to relate to me.

Before I got sick, I was pretty bad at it, but at least I tried. Afterwards? I was lucky to get to school at all, and if that meant I had to go in the same shirt I'd worn the day before, well then that's what it meant. (Thankfully, at my (all girls) college, this - or, even better, pajamas - would be the norm, rather than the exception, but I didn't know that then.)

So I kept trying the dresses on, kept marvelling at the fact that I was actually, kind of/sort of ... almost beautiful when I was dressed like this. I'd stopped feeling pretty when I'd stopped being able to dance. I hated my body and the way it wouldn't do what I wanted it to do, and I hated the 10-15 extra pounds I'd put on since I stopped being able to move freely. I just... was so unhappy. But then I actually thought I looked GOOD in those dresses, I actually thought I was pretty.

- And it hurts me that I am still so negative about my body, and that I hate it for all the things it can't do instead of loving it for what it does. It's better now then it was then, but God, 16 years later, you'd think I'd have made more progress on accepting that this is the way I am! -

But I also didn't have enough confidence in the way I felt to make the bolder choice - in the end, the pink and black dress went back to the store, because I didn't feel like a good judge of what would fit in with everybody else, and I absolutely did NOT want to stick out anymore than I already did ("You know, the girl who falls down a lot? She wore the oddest dress to the prom....") and so I went with the safe dress, the safe choice. And I looked fabulous in that dress, don't get me wrong - I was skinny and beautiful and elegant, and I had a great time with my friends, even though I did eat a box and a half of caffeine pills just to stay awake, and it was a fabulous night, that I don't regret at all.

But now, sometimes, when I have to decide something that I don't really feel all that confident about, I wonder: am I choosing the black dress, or the Audrey Hepburn dress? Am I passing on my (probably only) chance to feel like an elegant icon, because it might make me different, might make me stand out? As somebody who hates standing out, it's hard to choose the pink and black, hard to pick the thing that'll get me noticed.

But it might just be worth it, too.

And that's something I wish I had done then. And I hope I'd do it differently if I had the chance again.



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Day 01 Something you hate about yourself.
Day 02 Something you love about yourself.
Day 03 Something you have to forgive yourself for.
Day 04 Something you have to forgive someone for.
Day 05 Something you hope to do in your life.
Day 06 Something you hope you never have to do.
Day 07 Someone who has made your life worth living for.
Day 08 Someone who made your life hell, or treated you like shit.
Day 09 Someone you didn’t want to let go, but just drifted.
Day 10 Someone you need to let go, or wish you didn’t know.
Day 11 Something people seem to compliment you the most on.
Day 12 Something you never get compliments on.
Day 13 A band or artist that has gotten you through some tough ass days. (write a letter.)
Day 14 A hero that has let you down. (letter)
Day 15 Something or someone you couldn’t live without, because you’ve tried living without it.
Day 16 Someone or something you definitely could live without.
Day 17 A book you’ve read that changed your views on something.
Day 18 Your views on gay marriage.
Day 19 What do you think of religion? Or what do you think of politics?
Day 20 Your views on drugs and alcohol.
Day 21 (scenario) Your best friend is in a car accident and you two got into a fight an hour before. What do you do?
Day 22 Something you wish you hadn’t done in your life.
Day 23 Something you wish you had done in your life.
Day 24 Make a playlist to someone, and explain why you chose all the songs. (Just post the titles and artists and letter)
Day 25 The reason you believe you’re still alive today.
Day 26 Have you ever thought about giving up on life? If so, when and why?
Day 27 What’s the best thing going for you right now?
Day 28 What if you were pregnant or got someone pregnant, what would you do?
Day 29 Something you hope to change about yourself. And why.
Day 30 A letter to yourself, tell yourself EVERYTHING you love about yourself

"If I had my way I'd make health catching instead of disease."*

First off, I want to thank all of you for your very kind thoughts about my grandmother. She is much improved, and has moved from the hospital to a local (ish) rehab, where she's getting some much needed help with her leg strength and balance. Aside from being a bit more wobbly (which was an issue prior to her fall), there seem to be very few ill lasting effects. Knock wood, throw salt, praise the god/goddess/ancient deity/flying spaghetti monster of your choice. I do really appreciate the support I've received here, and can't tell you how much. We're working through it. Slow and steady.

One of the things I've been spending a good amount of time pondering during the endless hours of "hurry up and wait" or "the doctor/therapist/food will be here any time now" that have accompanied this experience is the shocking clarity of learning just how closely my grandmother's condition and my condition resemble each other. A few of the correlations I've seen just today -

• Because she has an atrial fibrillation, her heart rate and pulse can drop dramatically, and she's been on multiple blood pressure meds to help control this. For me, that's the POTS, and the drugs she's been on? I've been on the majority of them too.
• She has weakness and swelling in her legs, and they're not really sure why. Ditto here.
• She has freezing cold feet - sometimes requiring three or four pairs of socks. I also have this problem (although it's not as constant as hers, and is complicated by the burning on the bottom of my feet sensation I get too), and most days, if you put your hand on my upper thigh and slowly move it down, you can feel about a 10 degree temperature drop by the time you get to my icy cold toes.
• She has an unexplained (but attributed to her heart condition) dizziness and vertigo; I have an unexplained (but attributed to my POTS) dizziness and vertigo.
  
• Neither one of us can stand, unaided, and straight. We invariably begin to tip after just a few seconds.
• She's passed out more than once - her history of fainting spells stretches back to when she was a teenager. Want to take a guess when mine started?
• She's weak and she's tired a lot, and they like to say things like "Well, you're ninety three, what do you expect?" when she complains about it. I'm tired a lot, and unreasonably weak, and they like to say things like "Well, you've got chronic health conditions, what do you expect?"
• We've both learned to sit at the edge of the bed, feet dangling for a minute, before we dare to get up. (And by 'learned', I mean to say we both remember it when we feel like it, and sometimes screw the consequences when we don't.)
• We both have extremely sensitive skin - her back has been as hot as coals ever since she was admitted to the ER, due to some combination of hospital/rehab soap and laundry detergent. They gave her some medicine to put on it, which I've been helping her with, but the rash I got on my hands spread like fire all the way up one of my arms, so I had to start using gloves to put it on.
  
• Neither one of us likes to be in the position of asking for help, and get frustrated by people telling us what/how we should be doing things. (Oh wait: this is unrelated to our medical conditions unless "stubborn as a jack ass" is now listed as a medical condition.)
  
• Same goes for physical therapy and occupational therapy. (See above point, re: jackassery.)
  
  

Our medical conditions are in some ways eerily similar, even though I know they are not the same: I have had about a million heart tests, and by now, for sure, they would have found the murmur or the blockage or the tiny little atrial valve that plague my grandmother. It's not what's wrong with me - I've got a million things that she never had: extra sensitive sense of smell and hearing, allergies to every natural and man made substance ever, hyper reflexes, muscle wasting/weakness, chronic infections and low immune system support; Most importantly? Pain, pain, pain, pain, pain. I'm so glad that she doesn't suffer from pain that I could cry, but, since it's my most debilitating symptom, I can't pretend that it's not the biggest difference in our situations.

So I can see the differences, and the parallels, and I have to wonder: how much of this is in my genes? How much of this - whatever this turns out to be - is in everybody's genes, just sitting there, only coming out when something goes wrong? Because I can also see the similarities between me and my mum (who's got ulcerative colitis), or my sister with depression, or my other sister who developed random allergic hives for 8 months that disappeared as suddenly as they came. So how much of what's wrong with me is laying dormant (or not-dormant, as the case may be) in the people I love? And how much of it is floating around in everybody's genetic code?

It's a scary thought: Both the "why did I wind up being the lucky one" part, and the "Holy shit, what is wrong with us???" part.

The main difference between us is that my grandmother's condition - aside from her extremely sensitive skin & occasional fainting spells - waited till she was in her eighties to attack. She had a full 'before' life - with 9 kids and a husband, and the mother in law from hell, and being a nurse during WWII, and helping to raise her granddaughter when her son died, and a million other things that happened before she started to become unwell. For me, my life before - the lesser (percentage wise) portion of my life, at this point - ended at 15. Before I had the chance to do so many of the things I wanted to do, and consisted mostly of being a child, a dancer, a reader, a babysitter/big sister.

But here's where I go back to our similarities, because my grandmother - then in her eighties and now in her nineties - dealt with it. All of the inconveniences and indignities of being ill and having to figure out how to live your life the best way you know how. And - while I may not always succeed as well as she does - I'm certainly going to do my best to make that our most striking similarity: the fact that giving up ain't really an option. That we are not the illnesses we've been battling, or whatever disabilities we may have, but only ourselves.

And that the weaknesses we've got in common don't matter near as much as the strengths we share.

*Robert Ingersoll

It's November...

And we all know what that means: It's NaBloPoMo again!

It's time for an overflow in Google Readers, an influx of random postings, an avalanche of "what the hell do I write now"s!

I'm actually excited to be participating in my fourth annual NaBloPoMo, because I have a million half-posts which have been brewing in my brain (and in the draft folder) for too long, and for the sake of actually finishing them, having a deadline is probably a good thing. Which means you'll finally get my post on the new XMRV findings, a few posts about ableism that I've been trying to hammer out the details on, some of my thoughts on the blogosphere, more than a couple of posts with some pictures, and probably a ton of quotes, because that's the kind of mood I've been in lately.

And I'm going to do my best to comment (at least) once a day too, this month, giving myself a new goal to meet. I feel like I've been reading so many good posts, and then clicking away without saying anything. Mostly because it feels like all I have to say is "Me too" or "Totally THIS.", and those feel inadequate to me. But following a recent discussion with a fellow blogger, I realize that when I get those comments, they mean the world to me, so leaving them is worthwhile, even if it doesn't feel like it.

So there we go: Two goals, thirty days, and a blogger who feels like setting goals might be akin to tempting fate, but is going to do it anyways.

Deep breaths, everybody; deep breaths.