Monday, September 27, 2010

A learning experience is one of those things that says, “You know that thing you just did? Don’t do that"*

I can't believe I've left this post up for this long, since, in my head, I've written about thirty six posts since last week. Unfortunately for my blog (or perhaps fortunately, since my brain isn't exactly in tip top condition lately), my computer doesn't travel as well as I would like it to, and there's no internet connection at the rehab. I don't know what their problem is, since, if I were using their facilities, I would definitely need the distraction.

Anyways, my grandmother is doing very well, thank you: She's got a discharge date set for this Thursday, and her improvements have been quite great and quite quick. She still needs to use the walker, which is absolutely going to be a point of contention once she's home and isn't on her best "let me out of here/ see what a good patient I am!" behavior, but we'll deal with that when we get to it. In the meantime, she's doing really well. (Thankfully.)

There's been a lot of other family drama - some of which I can't talk about here and some of which I just don't have the energy to go into right now - but I have been trying to keep what energy I do have focused on caring for my grandmother and putting it where it can do the most good.

As for me, I'm ... I don't even know how I am. Up in the air, like one of those little juggling balls, going round and round and up and down under somebody else's control. During the (not continuous, grand total of) forty-five minutes I slept the other night, I had a very vivid dream of myself, sitting in my uncle's car in the passenger seat. We were making the twenty minute trip we make four times a day (twice up, twice back, because he refuses to eat any place but home, and don't even get me started on that), traveling the now-familiar route. In the dream, I seemed normal and everything was fine, until suddenly, I just reached over and pulled the door handle - very calmly - and - like someone escaping a kidnapping - ninja-rolled my way out of the car. I landed on my feet and just walked away.

It wasn't until I felt the gigantic surge of relief in the dream that I realized just how hard this whole situation has been. How out of my own control I feel my life has gotten - not just right this minute, but in the grand scheme of things.

And there are, obviously, things in my life that I can do nothing about - my grandmother's stroke, my own illnesses, having to move, losing people I love - Those things are going to be there, are going to happen, no matter how hard I try to will them away, no matter how much I don't want them to be. I can't control those things. But I kind of just realized that I'm still trying to control them anyways... and that I'm fighting a losing battle.

Which doesn't mean I'm giving up - far from it. In fact, it just means that I have to do a better job of figuring out what I am in control of, and what I do have power over, so I can do a better job of focusing on those things.

I know: this seems like the simplest thing ever, and it also seems like something I should have gotten into my thick skull long before now, but it really is an ongoing thing - it isn't as if I haven't been working on this for the past fifteen years, it's more like I am re-realizing that I am focusing my energies in the wrong direction, and that I need to pay more attention to fixing that.

The more I worry about how nobody else is coming to visit Grandmother - I am one of seventeen grandchildren, who came from 9 children originally - the more upset I get. (Yes, the 17 and 9 are spread out across the country, but there are at least eight of us within easily driven distance, and at least three more of her kids. Total who've shown up? Three - each visiting once, for a relatively short period of time.) But getting mad about it, or feeling resentful that they're not going out of their way to get here does me no good. It does her no good. All I have to do is show up, get the word out, keep doing what I can do, and let the rest go. If other people make (what I see as) poor choices, then it's their loss. It's their decision, and there's nothing I can do to make them realize that they are missing out. I don't understand it, but I don't have to, either. I just have to be there for her, and hope that it is enough.

The more I fret and churn over a vicious fight between my two sisters, the less helpful I am to anybody - On a recent day, I managed to "ruin" both of their days by bringing up the other one, and ended every conversation in tears. It's not helping them, and it certainly isn't helping me. I won't stop trying to help them figure out how to move on (I don't think I can: it would hurt too much), but I have to realize that it isn't in my control. I can only do what I think needs to be done, say what I think needs to be said, and then leave the rest up to them. If they're not ready to hear it - as is obvious by the fact that I always wind up hurting them and myself when I try to get my point across - then I can't do anything more but be here when they're ready for me.

I can chatter till the cows come home, because empty space in a conversation makes me a tad bit uncomfortable, but I'm never going to make my uncle say a single word he doesn't want to say. So I better learn to appreciate that there is such a thing as companionable silence, and figure out how to enjoy it.

Now doesn't all that sound so lovely and mature and easy?

Yeah: the writing of it always makes me sound like I've figured it all out, but in reality? I'm going bit by bit, trial by trial, day by day.

(Although I have really figured out how to like silence. Sometimes I write the best blog posts in my head when he and I are just sitting in the same space, being together, but not having to say anything - how'd you like this one?)

*Douglas Adams

Saturday, September 18, 2010

"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

Tuesday, September 14, 2010

Let me tell you something...

(said in my very best Fire Marshall Bill voice): I just don't know what to tell you.

My head is full of so many things it is like a buzzing, humming swirling hive of activity. There isn't any space unoccupied by some new terror or old enemy or flashing through like lightening bolts or scrolling through like a news crawl - "This just in: You are Still Hurting! And reports are coming in of even more affected areas - Devastation spreads! Stay tuned to this channel for further developments."
Basically, the inside of my head is on overload, and that makes it kind of difficult to weed out enough (logical, legible & un-loopy enough ) bits and pieces to write something. Anything. Anything at all that doesn't wind up reading like the inside of my head - a lot of words and letters that are seemingly unconnected and yet make entirely too much sense.

So that's where my head is at. My body, at present, is camping on the Pull Out Couch of Death (tm) at my grandmother's house. Again. As I was laying on it in the dark last night, I was thinking back: I didn't have a lot of sleepovers here as a child (probably because our houses were about 3 minutes apart from each other), but occasionally, when my dad was on leave from the Navy, my brother and I would stay for a night or a weekend. We must have slept on this very same pull out couch, because there's no way this thing is less than 30 years old, although the one we slept in seemed huge to me then, and this thing feels like a postage stamp now, compared to my queen sized cloud of awesome at home.

I can remember laying on this very same bed, in the almost total dark - my brother beside me, his foot twitching back and forth as it does every time he goes to sleep; the street light shining in through the cracks in the shades, just enough light to keep it from being pitch dark; an intense and eerie quiet all around that never seemed to happen at my house no matter what time it was - and being petrified of the odd shadows, the different creaks and groans of the house, the ticking of the clock.

I must have been under ten (maybe even more like 5 or 6), but the memory came back to me so clearly last night - just the feeling of absolute, frozen, "I can't go to sleep because I might never wake up" terror. I was sometimes (ok, maybe most of the time) anxious as a child, and once my brain latched on to something - even if I knew it was ridiculous, outlandish, and totally improbable - I just couldn't let it go. It would swirl around in there like a tornado, picking up bits and pieces of other worries and wishes and whatevers as it spun ever faster and grew bigger until I thought I would explode from it. (This is not that different from how I am now, come to think of it: I guess we don't grow out of as many things as we would like to believe we do.)

The fears of my ten year old self seemed laughable last night - the creaks of an old house are nothing compared to the strains of an older life.

I have been staying here for four days, as the sibling switching that occurs at my house has required a new paint job in one particular room, and I don't know how much longer I'll stay. My grandmother has been in the hospital for all of those four days, and we don't know how much longer she'll stay there, either.

On Friday night, my uncle heard a thump upstairs in her room, and he went up to check on her, and found her on the floor, tangled in her blankets. When he got to her, he realized he couldn't understand what she was saying, so he got down on the floor and took a good look at her face, and saw that the left side was drooping. I think everybody recognizes that symptom as what it turned out to be - my Grandmother had had a stroke.

As it turns out, she had what is (apparently) the best kind of stroke - a mini-stroke, a temporary stroke, a Transient Ischemic Attack. At the hospital, they were able to treat her quickly, and she has since recovered to about 85% of her normal self - her speech returned quickly, the drooping went away, she is able to breathe and swallow and sit up and stand all on her own. The only physical signs of her stroke are a large bruise - which takes up a quarter of her face - she got when she fell out of bed, and some lingering weakness and swelling in her left leg, that the doctors are pretty sure will go down on its own.

She is bored and frustrated by her lack of control at the hospital (I come by it naturally, see?), and she's tired because "the people who work here have no respect for night time hours," and she's a little bit embarrassed and scared, I think, too, which she has shown by being pissed at my uncle for making the call to the ambulance in the first place. But she's herself, and she's ready to come home, and she doesn't understand what's taking them so long to let her go.

She's alright, is what I'm saying: She's doing a lot better than the doctors said she would be doing, and excellent as far as I'm concerned. But here's the thing - my brain just can't shut it off. It's got this worry wrapped up in the tornado now, this huge "She's 93 years old" funnel cloud full of "But what if"s and "I'll stay here forever if you need me to" and "I can't handle this" and "God I hate hospitals, even if her room is better than most hotel rooms I've stayed in, why the hell does it have a fake fireplace" and "Holy shit, I really can't do this again" and a million more swirling swishing sounds and sights and memories and realities and fears.

It makes me long for the worries of ten year old me, that's for sure.

In the meantime I try to be helpful: try to answer the phone and pass out the updates to the family scattered around the country; try to convince UJ that I can make dinner for myself - and for him - and that if he needs to stay at the hospital all day, I'll be fine; try to make the doctors who come into her room speak louder because she doesn't have her hearing aids in and she needs them for a reason; try to ask questions and think of solutions (the rugs at home can all come up, if that's what we need to do/the pull out couch needs a much better mattress if she's thinking of sleeping on it long term) to all the little issues that are popping up; try to rub lotion on her back because I also come by my sensitive skin naturally, and whatever they wash the sheets in has given her a rash (even though the lotion she uses to soothe her sensitive skin leaves my sensitive skin raw, red and burning); try to do something - ANYTHING - to make myself of use, and to give me something else to focus on, a stopper to keep that tornado from spinning so fast that it carries me away with it.

Saturday, September 11, 2010

Disability related linkage

Here are some disability related posts/pictures I've seen in my recent travels through the series of tubes that comprises the internets:

  • Here's an exceptional post by Miss Britt aboutAccepting her new "normal" as she discusses her depression. It is just... amazing.
  • Also of note is this post, and the (as always) fantastic comment section, about disability and body image over at FWD.
  • I'm not entirely sure how I feel about this news: A German toy company is making stuffed animals with ascribed mental illnesses - A turtle with depression, a snake with hallucinations, a sheep with a personality disorder. I've been thinking about it since I saw the initial report, and I still can't decide if I like the idea or not. On the one hand, why not? Why shouldn't there be a percentage of dolls and toys who have illnesses, just like there's a percentage of the population that have illnesses? On the other hand, how are they going to handle it? Is it going to be just one big stereotype on top of another: How do you play a personality disorder? The website, which is called the Asylum :sigh:, is not in English, so I can't exactly tell what the poster is saying about the toys, besides it's about "psychoanalysis" and "treatment" (which seems to be hugs). I just don't know. What are your thoughts?
  • Here's a picture of wheelchair fail, via Friends of Irony.
  • And here's some wheelchair win, via Tots and Giggles. It's a Wii Balance board based mobility aid that moves using weight sensors, so as the baby moves, or leans, so goes the board. It's pretty amazing work, and I can think of an astronomical number of implications for other types of mobility aids and improvements. From their literature
    We hope to use what we learn from this work to develop systems to allow safe, purposeful powered movement for infants with physical disabilities. The next phase of the research will be to study the same research questions using different control systems, and working with children with disabilities.

I always have 23000 links that I mean to post here, and then I get overwhelmed and wind up forgetting. So here's to remembering for once!

Thursday, September 02, 2010

Happy Holiday I Never Heard of Before

True Story: Sometime in the early nineties, when 90210 was in its heyday, and I was in the 7th grade, my best friend and I convinced my mom to take us to a local mall where Ian Zearing and Luke Perry were going to be appearing.

To this day, I have no idea why we did this: Because it was on the radio? Because some of our friends were totally rabid Luke Perry fans? Because it seemed like this huge deal at the time? I am honestly not sure - neither she nor I were huge fans of those particular actors, (although I did have a crush on Jason Priestly in his pre-90210, Teen Angel and later Sister Kate days) even though we liked them well enough, and neither one of us remembers being particularly enthusiastic about the show as a whole. We weren't super fans or mega fans, or anything more than "I know all about Brendan and Kelly, think Brenda should get back with Dylan, and don't care about Donna and David" followers. We watched the show, but in the pre-everybody has their own TV in their room days, weren't guaranteed to even catch it every week, and it wasn't that big of a deal because everybody in school would be talking about it the next day anyways. All I can come up with was that some of our friends were going, so we wanted to go too.

So we talked my mom into getting up at 7:30 on a Saturday morning (no easy feat) to drive us the 6 minutes to get to the mall. (I was not allowed to take the bus back then. You too can roll your eyes over the injustice of it all with my 12 year old self if you'd like.) When we got there, it was packed. Shockingly, worse than any Christmas shopping day ever, overly packed. There must have been hundreds teenage/tween girls there, and they didn't even let us inside the mall.

Instead they rounded us all up on the outside concourse, behind the mall, around a little lake - which up till then I hadn't even known existed - with a path that was cut directly from the Charles River. I remember standing there shivering, although I can't recall exactly what season we were in - Cold. That's about it. Covers everything from November to April in Cambridge, so I can't narrow it down. Just that it was cold and brittle, and that teenage girls who had taken all morning to get their hair just. right. in anticipation of meeting the dreamy Luke Perry had their hopes crumpled when the wind whipped around and gave everybody the same "I've just lived through a cyclone" hairdo.

My mom had her coffee, smoked her cigarettes and muttered under her breath about how she let herself get talked into these things. My friend and I, unable to find any of the other girls who'd sworn they would be there in the midst of the huge crowd, mostly shifted from one foot to the other trying to keep warm, talking about nothing in particular and dreaming of hot chocolate and donuts when this was all through. I don't even remember being excited. Just cold. And bored. And not particularly happy about this waiting outside nonsense.

And then there was an announcement, and the lady from the mall must have said something about them coming, because there was a huge cheer. We didn't hear what she said, but the excitement in the crowd amped up a lot, and I know my friend was starting to feel it, because she started to do this tense little hop. Other girls started to pop up a little bit too, trying to see over the crowd, and for some reason, this made me feel anxious as well. Something was coming. Somebody was coming, and it was somebody famous. And that started to get a little bit exciting.

We waited like that for a few minutes, things getting louder and more intense, until finally we heard a boat's engine coming in from the river. From where we were standing, I could see the water pretty clearly - everyone had assumed they'd be in the mall, so those of us in the back actually wound up having the best few when we all had to turn around.

And now girls were screaming, and there was a lot of noise, and the boat was zooming around the little waterway (pond? maybe.) and the two actors were on the boat waving grandly. Smiling, waving, on their parts; cheering, screaming and clapping from the crowd. I have to admit, the noise was slightly overwhelming. I do not remember contributing to the noise really, but I must have: I was big on fitting in, so I can't imagine I just stood there and made a "Why the hell are we all making so much noise?" face, even if that's what I was feeling. I probably cheered and clapped, and I do remember hugging my best friend back when she was so excited that she hugged me.

And then Luke Perry took a megaphone, thanked everyone for coming and said what great fans we were. And Ian Zearing had his turn and said something very similar. And then the boat went around the little waterway again, and it zipped back out on to the river, two actors waving as they left, hundreds of girls standing there cheering.

The entire experience had lasted ten minutes, tops.

Now, I had not really even been all that excited. I had not even particularly wanted to meet the actors. But I can remember being more than a little bit pissed that all they did was zoom around the water twice, say "Thanks for coming" and then zoom off again. I know I wondered what the hell I had gotten out of bed early for. And I definitely remember being more than a little upset that they never even let us in the mall (I wanted hot chocolate!) Other girls, girls who'd brought posters or hats or t-shirts for them to sign were probably more than a little upset, and I don't really blame them: I'm pretty sure we had all been told that there would be a signing, so I can imagine more than one tweenage girl left with a broken heart. (Probably through no fault of the actors themselves, but rather some bad public relations, but still.)

So that is my one and only "I've met a celebrity" story, and it contains no actual meeting, and makes me sound like one of the Twihards who pass out at the mall when a certain sparkly vampire (or rather, the actor playing him) shows up. In reality, my brush with celebrity was cold, disappointing (no hot chocolate!), short and rather unimpressive.

But still: It did give me a story to tell on 9-02-10 Day. :)