Time with Uncle Jack

A few years ago, I was briefly staying with my uncle, just to keep my eye on him a little bit after he had a non-invasive, non-emergency procedure that required anesthesia. (Mostly because a) he is a pain pill lightweight and once passed out after taking a SINGLE vicodin and b) because he'd be alone in the house otherwise and I am not OK with that.)

Our relationship now (in the post-living together while caring for Grandmother years) is a pretty easy one, but he still has his boundaries and I have mine, and we both try really hard not to cross them. (And I also try really hard to steer other people away from his, because he has a tendency to be.... gruff when his boundaries are crossed, and I like it when other people like him and don't think he's a grump all the time - because he isn't.)

Anyways what I was going to say was that he's nervous about a medical thing, and I know how that is. And he doesn't want to talk about it, except he kind of does want to talk about it, but only sometimes and only on his own terms. So my role right now has been mostly distractionary - we spent hours talking about family history this morning, looking through old pictures (we have a shared love of organization, geneology & family stories), and tonight were up past midnight talking about cars and racing. I now know approximately 300% more about cars and racing then I did when we started talking, but considering that my initial knowledge was basically "Cars can go fast", that is still not saying much.

I am in no way interested in cars and/or racing - if you'll recall, I do not even drive-, but I am interested in my uncle, who loves both of those things and was both a racer and an instructor at some pretty prestigious tracks, back a decade or so ago. I knew that if I could listen long enough to get past the "Formula one tracks in Germany with deadly sounding names that only people with suicidal tendencies would so much as go near" info dumping, then, eventually, we'd get to the good parts.

Here were the good parts:

• When asked who some of his favorite students were, or who he thought were the easiest students to teach, he said "Hands down: Women." Which was unexpected. He followed up with this anecdote - A married couple signed up for the weekend of lessons: the husband was a semi-experienced racer (but in a different type of racing), his wife seemed excited to be there, but really just along for the ride. During the husband's trips around the track, he was super aggressive with the car - constantly 'overshifting' and forcing the car to comply with what the man thought it should be capable of doing, instead of what Uncle Jack was telling him it should be doing. It was so 'twitchy and frenetic' that he had to pull him over into the pit and make him calm down before he would let him continue his lessons. The wife on the other hand listened to what Uncle Jack had to recommend, eased the car into and through the turns and whatnot, stayed calm and unflappable during her laps. "It was as if we were in a completely different car", he said. At the end of the weekend, the husband had been demoted two classes (from an advanced intermediate down to a novice) and the wife had been promoted from novice to intermediate. The husband's aggression did not remain on the track, and he vowed never to return. I guarantee you that if that couple is still together, that is a story the woman tells over and over again, loudly and proudly. "Remember when you were such an egotistical ass that our instructor demoted you? And I was my normal awesome self and got an unexpected promotion? We should totally do that again." I would tell that story often (and would probably be divorced, but that's beside the point.) 
• Uncle Jack had three near misses in his track career - one spin out (due to rain, a rough turn and a hill that he didn't hit just right), and two students who somehow managed to power through well enough not to wind up hurting anybody. One of which he successfully guided through the near crash "just keep focusing on the furthest point of the track and gogogogogogo" he told him, as they nearly slid off one side but managed to keep all but the back tire on the track, in the end; And the other  where they did wind up going completely off track but were luckily uninjured.
• also blah blah blah sports stuff

But between our chats and discussions and the things we're not discussing, one of my favorite things about being here is the companionable silence. We can spend hours just sitting - in the same room, or across the hall from each other - each doing their own thing (I'm =shocker = reading; he's watching hockey) for hours, but it's not ... uncomfortable. It's an easy, light shared silence and I don't feel compelled to rush in to fill it up. (As my social awkward self usually does.)

It's a nice feeling, and today's Uncle Jack's birthday, so maybe I can run over there and spend some time with him.  

When I was a kid, my bedroom had eight windows. It ran the length of the house and was originally a sun porch, and I shared it with 2-3 sisters at any given time, so it wasn't always my favorite place, but I really got used to those windows, I guess.

I was usually afforded an end of the room (as opposed to my baby sister, who always got stuck in the middle, and my older sister, who was only there part-time and had to share whereever we could fit her in), which meant one of the big windows. Only slightly smaller across than my twin bed was long, and within six inches of the ceiling type big.

Once the spring rolled around, our windows were almost always open, particularly once the heat of the summer hit - we did not have air conditioners when I was a kid, and one of my sisters once tried to stick her hand into a fan, so our room didn't qualify for one of those, even at night. Living across the street from a parking lot, there were occassional nights filled with fools and their clinking beer bottles, hollering at each other (mostly happily), while I lay under my threadbare Strawberry Shortcake sheet, sweating and terrified (beer bottles clinking is a noise that a child of alcoholics identifies as decidely NOT GOOD pretty early on). But for the most part, everything about having the windows open was a delight to me.

I was not an outdoorsy kid.
(I am not an outdoorsy adult.)

But in our house, especially during summer vacation, if it was nice out, you were outside.
That's just how us 80s kids rolled, really: Go outside, get into trouble, don't slam the screendoor when you try to sneak back inside for a drink or a popsicle, make sure you haven't gone so far that you can't hear when Mom calls or Dad whistles, and if you do go farther than that, ask for permission first.

We played in the schoolyard next door a lot (it's locked now, which always makes me sad: although I'd prefer not to relive the many many games of Sting I lost to my siblings and their friends in that particular square of cracked asphalt, it's sad that the kids in our neighborhood don't have a place to go now, like we did then) - seemingly endless games of Sting and Dodge and baseball-oh-my-god-NTE, How-did-you-manage-to-get-hit-by-the-ball-if-you-were-sitting-around-the-corner???

I wasn't good at any of those types of things, but my brother let me hang out with him and his friends. My cousins taught me the best hiding places and one summer I was finally old enough to ride my bike further than the first corner and back again. I did outdoorsy things, and I had a good time, but I needed book time, no matter that it was summer.  I needed 'in my head' time, no matter that there was never any quiet.

I'm thankful that my mother (and grandmothers, both) is/are avid readers and recognized my bookish nature. (My mother used to punish me by taking books away, the same way she'd take my brother's baseball cards, or my sister's cell phone many years later.  My mom has good aim, that's for sure.)

So even though the rule was "go outside, get out of the house, please don't kill each other or bother me unless someone is bleeding", when I would sneak back into the house after a few hours of being bruised by whichever ball the boys had in their vicinity (it didn't matter if I was playing WITH them or not, just being near sports equipment usually meant damage for me, somehow), and would wind up flat on my bed with a book in my hand and the breeze coming in the big window, my mom never really minded that much.

Sure, I'd get the occassional reprimand or - especially the summer I had to get reading glasses and getting used to wearing them was giving me headaches - I would be reading and suddenly have the book plucked out of my hands by said mother, who'd inform me that outside and fresh air were waiting for me yet again.

But for the most part, laying there on my bed, having the lace curtains (and we should really talk about the fruitless inefficiency of having see-through curtains, sometime, if I can remember to do that) tickling my legs or the back of my (usually sunburned) neck while I read about living in the middle of the Big Woods or how Christmas just wouldn't be Christmas without presents, are some of my very favorite childhood memories of summer.

They're the reason I'm looking for windows while apartment searching, even though I'm allergic to the sun. They're the reason I keep the windows open even though it's way past chilly enough to close them for the day. They're the reason I've got freaking sheer curtains when I'd do better with black-out ones. And they're the reason that laying here on my queen-sized bed, reading for five hours while the breeze blows in beside me feels like such a treat just now. (So can I blame them for getting nothing else done? I think I'm going to. "Fell down a nostalgia well while reading Avengers fanfic; excused from real life today.")

Food Stuff

One of the things I hear/read/am haunted by most as a person with chronic illness is the completely inaccurate thinking that changing my diet will change the status of my illnesses.  I mean... wait.   Maybe it's not completely inaccurate, because obviously diet does affect your overall health, and changing my diet could potentially kill me, so not inaccurate at all, I guess.  It's actually the thought by outsiders that changing my diet will CURE me where the inaccuracy lies.

First off, there are so many moving parts to my diet that abled people do not have to consider, that it's almost a completely different experience, eating. What do they have to do... pick a food and eat it? That is not how eating works, in my experience as a disabled person. 


And it starts with the very basics: Who has the energy to purchase and bring food into the house in the first place?  Not me.  If it's in-person shopping, 99% of the time, it's me sending someone out with a list of things, and having to be happy with whatever they come back with. (Which is usually about 75% of what I've asked for, often not exactly as I've requested, but you settle for what you can get - example: I'm allergic to certain kinds of fruit, and yet if I ask a carer to read labels and make sure that there's no pineapple in what they're buying, that doesn't always happen, so sometimes I wind up with food I can't eat.) I do a lot of my food shopping on apps or the internet, but here too, you have to settle for what you can get - the shoppers in the store decide what quality and cut of meat you get, or when the expiration date is (I have received meat on the sell-by date, for example, which means I have a limited amount of time for the meat to actually be useable).  They decide if your bananas are green, or yellow, or turning into brown.  All of the little choices you make in the supermarket are made for you, and you deal with what you get.  Shopping via app has literally kept me from starving, so the convenience of it can not be understated - someone brings the food to me, I don't have to carry anything heavy (I can't lift a package of bottled water on my very best day), and occasionally, they give me someone else's bag and I get to try something I never would have tried on my own (bc once the bag is in my kitchen, they can't take it back out), but there are still drawbacks.


That's just the simplest, first step of eating - having food available to eat.  And you can already see that there are layers of complications that a lot of abled people do not have to consider. 

Let's move on to dietary restrictions.  My own personal experience with disability and chronic illness has come with a huge list of food-related dos and don'ts, and, in talking to other disabled and chronically ill people, I have found that this is almost a universal experience.  I'm going to discuss maybe half of mine here, and I want you to just keep in mind as you're reading that I recently dislocated my jaw, so whatever fits into these basics? For a period of time also had to be nearly liquid.

• I have to monitor my blood sugar closely, which is complicated by frequent infections and sometimes in no way related to what I have previously eaten, but needs to influence what I eat next. 
• I need to drink upwards of a liter of water, every day, without fail, for my blood pressure. 
• I also need to eat a high sodium diet, which is the opposite of nearly every other person's dietary recommendations, and I have had to explain it to actual nutritionists more than once. 
• I am taking a medication that requires you to dilute it in water and drink it half an hour before eating, so I have to have the medication ready and plan out meals in advance enough so that I know 'I will be eating in a half hour'. 
• In the meantime, the medication makes me nauseous, so I feel like not eating basically every time I drink it. 
• I need to eat enough at each meal to take some heavy duty meds, because otherwise THEY will upset my stomach, sometimes causing vomiting, and having to start the whole cycle all over again. 
• I sometimes require rescue medication, which also requires food, even though (in the case of migraines or extreme pain), I am generally pretty nauseous when I need to take it, and that makes taking it nearly impossible.
• In addition, I have food allergies, food intolerances, and gastrointestinal issues that sometimes lead to me feeling full without having eaten anything in over 48 hours. 

I also deal with chronic pain, which makes cooking difficult, obviously, but also, in a less obvious way, makes eating difficult:  I am so used to tuning out the physical feelings of my body (because if I felt all the pain I feel, all the time, I would not still be alive, and one way I have found to cope is to shut down the things that feel too much), that 'normal' physical bodily stuff? Doesn't even register.  I don't remember the last time I was hungry, or what hungry even feels like.  I have to set timers on my phone so that I will drink the water I'm supposed to drink, because thirsty often doesn't register either.  I have had issues because I sometimes 'forget' to pee? Like I know it's a thing, and I feel it sometimes, but I can block it out, no problem.  I have learned, through years of hideously painful experience, that listening to my body is dangerous.  For my physical and mental health. 

So hungry? I don't know.  But does that girl scout cookie smell good? Yes: So I'mma eat it.  

Those are basic guidelines in which I have to then
1) Find the spoons to make a meal
2) Find the spoons to eat the meal

I haven't even mentioned the fact that a lot chronically ill/disabled people are caretakers or parents, and that means incorporating the needs and wants of OTHER PEOPLE into you meal planning as well.  Or that all of the "When I eat healthy, I can FEEL the difference" rhetoric is meaningless to a person who doesn't feel better, ever.  Nothing I eat makes me feel more tired, because I am already at 'exceeds human levels of tiredness' tired.  Nothing I eat ever makes me feel more energized, less in constant pain, more of whatever you are feeling that you think you need to pass on the good news about.  It is basic fuel, it somehow manages to squeak through all the restrictions I've listed, and sometimes it tastes good, and other times it fits in my mouth & I can swallow it without having to chew it more than once, and that's the level of happiness I manage to equate with what I'm eating. 

Given all those givens, if I sometimes resort to eating a sleeve of saltines, slathered in peanut butter, the LAST THING I need is for someone to come along and try to able-splain to me the horrors and evils of gluten.  I don't need anybody to explain to me that pizza isn't actually a vegetable, on a day when ordering a pizza is the only thing I have the spoons to do.  I don't need a random stranger, a doctor, a sister or you to attempt to convert me to a vegan/keto/supercalileavemethefuck alone diet plan, by suggesting that they know more about what I need physically than I do. 

Here's a hint: Ya don't.  I have lived with these restrictions (and a lot more that I haven't gone into) for this long, and managed to keep myself alive. 

When you're fighting for survival on a daily basis, sometimes remembering to count your goddamn calories is above and beyond what you are capable of doing, and that's just going to have to be ok with everybody, because I'm sick of defending it. 

It's not your business, honestly.  And if your diet works for you: Great.  So happy for you.  But you do NOT know what it's like to live in this disabled body, so I'm gonna need you to shut the hell up.