The Inelegant Disabled

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I just watched a documentary about adults who have deformities due to their mothers taking thaldimide during pregnancy. For those of you who have never heard of this drug, it was given to some pregnant women to calm them down, and it was popular during the 1950s and into the early 60s- even after it was known to be dangerous and cause birth defects and deaths of babies.

So there are adults now who have almost no arms, and some with little to no legs. At the time of the filming of the documentary (within the last few years) the company who made (and profited from) the drug still had not apologized for keeping a drug they knew to be harmful on the market. The people on the film live in Germany and England, so they get some government funds for their disabilities, but they still have not received any compensation from the company for their injuries.

But my problem with this whole thing had nothing to do with the injustice done to these people or their families. My beef was completely with the spin on this- and almost every other documentary I have ever seen about disabled people. Person after person was asked, “If you could change your condition, would you?” And every one of them said no.

Now these are people who can barely live their lives. Some of them have managed to find partners or find hobbies, but a few were desperately lonely. Their day-to-day existence was fraught with torturous work-arounds for things most people take for granted, like lifting a cup to their mouths to drink, yet each person said they would stay the same if given the chance to have a “normal” body.

Sorry, but I call bolshevik on that. I can tell you that, at least in my own life not a day goes by that I don’t wish I was well, and you may say that means I haven’t accepted my condition, but in truth, why should I? Why should I accept that I have a substandard quality of life and if there was a magic pill to take that could fix that it wouldn’t be an awesome idea to take it? Why is it that people think suffering is inherently noble and that being at a disadvantage but then pretending you like it that way and it’s to your benefit is a good thing?

I would love to hear a disabled person say, “Honestly I would love to _________________________ (hear, see, walk, think better, not shake, whatever…), but I try to make the best of the life I have. Really this is hard stuff, but I don’t want to complain all the time.” Because I feel like that’s real life. That’s the truth. Is it true that some people wouldn’t feel like themselves without their hearing aids or their arm braces? Sure. and I know that in some communities where there are surgeries to correct certain things (like cochlear implants for some kinds of deafness) it is very controversial. But as a person who faces obstacles that are beyond my control every day, I will tell you that it’s awful. And if I could be better, I would feel like a better version of myself. Not like a sellout to who I am meant to be. Deep down, I don’t feel like I am a hero for staying in a compromised position. And I am not persuaded that I should.

I don’t understand at all why the only acceptable version of a disabled person is the one who smiles and sucks it up and tells you how A-okay they are with their lot in life. Please forgive me for this comparison, but it reminds me of the very old depictions of black people in movies where the only “good” black person was subservient boot-licking yessuh, nossuh… with no free will and no ability to voice discontent with their position in the world.

Forgetting for a moment how disabled people are treated by others in society (sometimes better, sometimes worse- often depending on how “ugly” their disability is), I am more concerned right now with how I, as a disabled person feel in my own skin. And I feel horrible.

I feel guilt and shame and disgust and sickness and pain and discomfort and any number of other unpleasant adjectives that people don’t like to discuss because they would rather see the sanitized movie version of the disabled hero who can climb the mountain in spite of being in a wheelchair (currently there is a commercial for a granola bar featuring a man climbing a mountain with his daughter and hanging over the edge appreciating nature. It’s all very breath-taking considering- as the commercial tells you- that the man is completely blind…), or be an Olympic swimmer in spite of having no legs, or doing some other fantastic feat that would be beyond the ordinary even if the person was able-bodied. But now it’s not enough for us people with disabilities to make it through the day- we also have to do it with a perfect 10 in gymnastics and wearing size 2 jeans. Oh, and we have to have a super-positive attitude while doing it too.

Sorry, but I don’t want to play that game. It’s hard enough to just be a person in the world with all the baggage that attaches to that. I don’t need every documentary about disability to also tell me (never outright, of course) what an abject failure I am for not embracing how fabulous it is to be disabled. Yeah! It’s the best thing ever! I wouldn’t give it up even if you paid me!

Oh, please.

I don’t know where I’m going with this post, except to point it out and to call it out for what it is. Accepting yourself is great. Failure to embrace real people is a failure of us all. I think it’s important to be aware of the subtle messages we get so we have a choice to accept or reject them in a conscious way. This one, I reject.

Lettuce Take Advantage of Your Ignorance

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Saturday night I went with *h to the grocery store. Among the rows of beautiful produce I saw something which gave me such pause I actually had to call over *h to take a look: something called living lettuce, priced several dollars per head above a regular head of lettuce!

What was so great about this lettuce? What was so full of life-i-ness? So full of implied nutritional bounty that it merited extra hoopla, extra shelf-space, and extra extra extra price?

It had a clump of dirt and some roots attached to the bottom of it.

Now, I’m no soil expert, no botanist, and no master gardener, but I can tell you this with a fair amount of certainty: once a vegetable has been picked and it cut off from its life source (meaning the ground from which it receives nutrients), it is dead. And since the sun does not shine in the produce aisle, and no hydroponic waters flow into the plastic in which the lettuce is encased, that expensive lettuce was anything but living.

A dead dirty root ball does not a living vegetable make, but that didn’t seem to deter the grocery store from thinking there is a willing customer base for this exotic item. Now, I feel like I don’t need to tell any of you this, but it should be rather obvious that *h and I don’t exactly shop at upscale places. It’s not like we were on 5th Avenue at some boutique-y shoppe that caters to the elitist eaters on the planet. So who the heck is paying multiple times the cost of a single lettuce for the privilege of eating one with dirt on it?

I wonder, is this some new yuppie craze or do I really just not leave the house enough? Do people actually believe this food is somehow more nutritious? Here I should probably also insert the fact that this was iceberg lettuce, probably the least nutritious substance known to produce, so much so that I almost feel like it should be located next to marshmallows in order of bang for your food buck. Iceberg (which I think is yummy, by the way) is so poor a food that when we had a buuny we were warned not to give it iceberg since it contained approximately 0% nutrients, and when we had chickens, we were told the only reason to give it to them was to provide extra water. Humph- that’s “food” for thought…

But back to my grocery store rant. At a time when more of food is getting plasticy-er and faker, you would think that at least veggies might be safe. Or at least that if you go to the trouble to really try to suss out something with some value to it that you would be rewarded for your efforts. But for all of you who want to live large by eating (possibly/probably pesticide-laden?) dirt, here’s a thought: buy regularly priced produce and take it home and smear some of your own dirt on it. It’s cheaper that way, and probably just as healthy for you. And that way you won’t have to pay extra for the packaging.

Just a thought.

I Love The Seattle PD

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In the last few weeks in Seattle I have heard two different news stories about how the Seattle police have dropped the ball on investigating a crime. In one case, a woman was groped by a man as she walked into a store, and resolved that, if she saw him again, she would call him out on his bad behavior. She did in fact see him on her way out of the store, apparently waiting for other women to grope, and she took his picture with her phone and walked to the nearest police station to report his pervy actions. The police there were unmoved, and when the woman offered to show them a photo of the man who had grabbed her, they said a description would be enough. She got a pretty strong impression that they had no intention of following up on this violation, so she tweeted not only the photo of the man who had groped her, but also a few choice words about the police who had been so cavalier about not protecting and not serving. Unfortunately for them, the groper turned out to be a level-3 sex offender on the loose, and since the woman’s tweet about a dozen other women have come forward because they were also assaulted by this man (same area, same M.O.). In the end, a detective recognized the man from the tweet and scooped him up, but not before the Seattle PD got a big black eye and the sex offender got a lot of handfuls of women…

A few days ago I heard another story similar to this one. Again the Seattle PD was asked for help, again they were lukewarm, and again they dropped the ball. If all I knew of the Seattle police was what I heard on the radio I would be pretty afraid to live in Seattle.

But in real life, I’ve had a few interactions with the Seattle PD and all of them have been positive. They have always been polite and courteous, and always gone out of their way to be more helpful than they needed to be in a given situation. I have met police in completely neutral situations (a neighbor called them when someone was stealing mail from my mailbox, so they came to my front door to chat with me), in very volatile situations (at a political rally where tensions were high and things could very easily have been nasty or unpleasant), and with a friend who is a prosecutor (where, granted, maybe they were nice to me because I was with someone who was their buddy). I have been in courts and police stations (not as the accused this time- hurray for Seattle!) and at no time did I ever see anyone being treated in any way other than dignified (even the dirtbags).

This is not to say that I doubt the stories I heard on the news. I am certain that those things really happened; there would be no reason to make up any detail of those stories. I’m not saying that there aren’t burnt out people in every profession. But in an age where, “If it bleeds, it leads,” and we always hear about the downside of everything and the scummy side of everything, I just wanted to give a shout out to the cops here and say, Nice job!”.

We live close enough to the sketchy area in Seattle that we hear gunshots on a fairly regular basis. And since I’m not the one who is out there busting up the gangs, or responding to auto accidents or helping people in need, I can safely assume it is the police who are handling all of that so I can sit comfortably at home in my jammies enjoying my tea. Even if there are a few legitimate cases of folks who have dropped the ball (and I don’t want to minimize the experience of the people who suffered because of that), overall, I would give high marks to the police in my new home town. They have a really tough job and they get a lot of grief and aggravation- often for a lot less pay than they deserve. I think it is very en vogue to dump on cops these days and act as if they are some loose cannons out wild in the world just waiting to prey on innocent people. I just want to be one person who can stand up and say that is not my experience.

So, kudos to the Seattle PD. Keep on keepin on :)

The Only Thing To Fear Is Pain Itself

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As the years pass by and I am still a chronic pain patient, I wish I could say that I have become more stoic about pain. Rather, I feel like I have become more and more apprehensive about any type of malaise, to the point where as soon as I start to feel worse than normal, I flood with fear in addition to whatever other symptoms I am experiencing.

What is funny to me is that around other people, invariably if the topic of pain comes up, the other person will almost always say, “…but my pain is nowhere near as bad as yours…” Now I have no idea if that is true or not. Pain is one of those things that is impossible to measure. It’s very subjective, and at the end of the day, who’s to say whether one type of pain trumps another or one person’s “toughness” is more than someone else’s? All I know is that pain hurts. Being in pain is a pain. It’s a drain on your life and your resources on every level, and if you have pain, you suffer. It could be that my pain is really mild and I am just a big baby. Maybe I just talk about it more than other people. But the bottom line is that I am in a place with it right now that I need to get out of.

For the last few months, I have been reading lots of chronic pain blogs and books. I was looking for camaraderie, but I also wanted to see if there were any answers out there that I had overlooked. Maybe someone else had new ideas that I could benefit from. As much as I want to just accept that my circumstances are permanent, there will probably always be a part of me that can’t settle with not hoping for a miracle cure. It’s a tough balance to live in the present and not spend all my time chasing medical interventions, but still keeping my brain plugged into the developments out there that could really help me one day. But all of this reading has made me feel very anxious. Instead of feeling better that there are so many other people out there suffering along with me, I have started reliving my medical procedures and hospital stays right along with the people I am reading about. With each crash I am having in real life, I have dozens of voices in the back of my mind reinforcing that this type of situation is desperate and awful. Yes, I know it’s time to quit reading, but the problem is that I can’t quit being sick.

So laying in bed feeling horrible isn’t just horrible because it objectively is, it’s horrible because I know it will be like this for multiple days, because I know there are no medications I can take to make it better, because I know I don’t have a doctor who really understands what I am going through- and even if I did they couldn’t help me anyway. Instead of toughening me up toward pain, every spike weakens my resources for dealing with the next assault. Sometimes I have time to catch my breath between crashes, and sometimes they overwhelm me and drown me like waves in a stormy sea. Sometimes I feel like there are sharks in the waves in addition to the choppy water. Sometimes I feel like I can’t catch a break.

On the other hand, I am so blessed that I have many more resources than lots of other people with chronic conditions. I have a supportive family, with wonderful kids who help a lot and an amazing husband who always wants to do what he can to take pressure off me and make me feel better (a Sisyphean task if ever there was one). We can afford to order certain things online so I don’t have to go out to stores, and we can get convenience items that make life easier (I am currently feeling very spoiled that I have a canister of lysol wipes in every room). I have friends who drive carpool for me every single day (yes, this is a recurring theme that driving is a big trigger for some of my symptoms). I want to focus on gratitude, but I am too bogged down by PTSD.

So, what’s a chronic sicko to do? The fact that I am tormented mentally is not the same as saying that my pain is mental, although many people confuse these two premises. I am terrible at mind games like meditation or relaxation, but I am always open to trying something that I haven’t heard about before. Someone on an older post mentioned massage (maybe MelissaJoanne?), but I’ve gone a few times and it just made me sore- so if you know about this modality, what should I be asking for that I’m not? If you know of books or websites or blogs that you find uplifting, please let me know; I’m not at saturation point yet with information. And if you can pick up on something I am missing, please bring it to my attention. One of the things I am most grateful for in my life is all of you, who are always there, having my back, being great resources, and staying strong for me when I am crumbling.

Right now I’m holding my own, but I would love for you all to weigh in on this one before I crash again.

If you comment on this post, hug yourself for me! :)

The Numbers Game

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For people with blogs there is always a temptation to pay attention to how many people are reading your blog. It can be a great feeling to know that things you say resonate with people, or that something you talk about has the ability to touch a person’s life. It is very ego-gratifying to feel like you can reach across cyberspace into someone’s mind and have an impact on their deepest emotions. And if you are sometimes arrogant enough (as I am) to believe that you can offer a unique perspective, your ego will be stoked even more when you know that a certain post got x-number of views.

But that is kind of a dangerous game to play, because it makes you a bit of an intellectual whore. It puts you in a position where you are ripe to sell your ideas to the number-iest bidder, and write or not write posts depending on how you think they will be received. I will confess that as out-there as I can be when there is something that I want to say, there are topics that I avoid altogether because I know they will drive people away from the blog for no good reason. That makes me not want to look myself in the mirror, but when I see that I can lose (I am not making this up) literally hundreds of readers in a single day over taking a position on something that could be on the blog or not with no consequence either way, it’s kind of hard for me to justify putting things on the blog that I know will make me a blog-o-pariah.

If I talk about being sick and people drop my blog because they signed up to read about the garden and this isn’t really a garden blog any more, then it makes me sad, but I kind of have to just let them go. I am what I am and I’m not what I’m not. You won’t really find any more juicy gossip about my battle with the city of Oak Park on these pages because, for starters, I live in Seattle now. But if I write something about being a religious conservative and people drop the blog I feel kind of cheated. Sure, they can do what they want, but I feel like I want to email each of them, like, “Really? Has my writing gotten worse now that you know this? Did you like what I had to say about everything, but now that you know that I’m pro-life you suddenly find me intolerable? What changed about my blog in this moment that made you unsubscribe, except that now I am politically incorrect?” I don’t know why it bothers me so much more, except that I know that it does.

The funny thing about blogging, though, is how unpredictable readers can be. There are posts I have written where I have such a high afterward. I was full of adrenaline as I was writing, and I was sure people would love what I wrote as much as I did- and then I will get like 2 comments and people will be mostly neutral. And I can write something I think is so-so and people will go nuts. I have checked the comments sections of the blog to find so many comments I assumed the spam filter wasn’t working right, and have gotten enough emails privately about some posts to let me know what I wrote made a big difference- and often that happens on posts I never would have imagined.

For the first year or so of the blog, I had a policy not to check the stats. I had no idea how many subscribers I had, and I only knew how many people liked the facebook page because at one point *h commented that the number exceeded the number of residents of the city of Oak Park (it has since fallen by many thousand). Even after the fist year, I would only check sporadically, but now I check more than I should, and I will tell you that it only makes my writing worse, not better.

So why do I do it? Because I’m human. I think we are all looking for that ego-hit or that rush of excitement and I have been spoiled by getting it from the blog. I think I should wean myself away from it- or maybe each of you should recruit 10 friends to subscribe to the blog to make me feel better ;)

Anyhow, I’m off to make supper, and maybe my kids will tell me what a great job I’m doing. More likely they won’t, and Epic will have had an accident, and when I check the blog later another x-number of people will have dropped off because if this lame post. And maybe that’s okay. Part of life is learning to live in between the doses of ego-gratification, and finding the joy in the mundane.

I don’t ever want to be in a place where I settle for mediocrity from myself, but I would like to be in a place where I feel fine about posting, regardless of how many people read it.

Guess I still have some evolving left to do…

*h Wages War On Pot

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More than a handful of years ago, when I was still completely bedridden, my father brought food from a local deli to my house for lunch. At that stage, I wasn’t able to keep too much down and was mostly existing on IVs, but from time to time something would seem especially tempting and I would try to eat. *h walked into our room eating a piece of corned beef, and for some reason it peaked my interest. I asked him to bring me the bag full of meat so I could pick our a few pieces.

Being extremely helpful, *h chose 3 slices of meat for me and put them into a sandwich bag, which he brought to me in bed. He knew I couldn’t eat a lot, and he didn’t want me to waste, or to get overwhelmed by how much meat was in the serving bag, or something or other. He thought he was doing me a favor. And apparently what he thought I wanted was the delight of eating out of plastic, which he was graciously providing to me.

Unfortunately, part of the charm of me having the meat was me choosing my very own pieces, like an actual adult. Being super sick and bedridden didn’t offer me a whole lot of opportunities to exercise free choice, and here I thought I had a chance and someone snatched it from me. But since I didn’t say that (in fairness, who would think to say that?), I just fell apart when *h walked in with the tiny baggy of meat.

Being extremely helpful myself, though, I didn’t rip *h’s head from his shoulders. Instead I did what any normal adult did and burst into tears and threw the meat into the trash and refused to eat. It was hard then and it’s hard now to be an independent sort of person who needs to rely more than I would like to on other people for help. It’s hard to be an adult who gets treated like a child because of my illness.

In our kitchen, I have various pots, pans, and gadgets. I don’t own any that are extraneous, and I don’t buy things that I don’t need. One pot, which I bought when I lived in Israel, is the perfect size for soup. It works really well when I need to make multiple packages of pasta at one time- which is pretty much every day. It is a great shape, easy to wash, and has some sentimental value to me. About a year ago one of the handles broke off, but I still have no problem using this pot, and if I need to lift it up to dump anything out of it, I just wrap a towel around it.

Since I consider myself a fairly competent adult, especially in the kitchen, I think I manage quite well- even in spite of my pot’s obvious imperfection. This pot, however, drives *h bonkers.

Now I should say up front that I never ask *h to use this pot. I never ask him to cook anything in this pot, and if he needed to make supper or something, we have other similar pots he could use just as easily and he would never have to even acknowledge the existence of this pot. But just the idea of me owning this pot bothers him beyond all reason.

He says he is afraid I will burn myself one day when draining pasta, and he has periodically both suggested I replace this pot and tried to recruit other people in his campaign to get me to get rid of it. I have told him repeatedly that I like my pot and I think it is fine, and since I am the one who is using it, he should just get over his annoying pot habit. Competent adults should get to decide for themselves things like whether or not a pot is safe to use, don’t you think?

A few nights ago he came home from a shopping trip and had a surprise for me held happily behind his back- complete with goofy grin on his face- guess what? a new pot for me! How exciting! He was so proud that he found something just the right size and just the type he thought I would like, and it was even a great price!

If only I hadn’t told him 5,973 times that I didn’t want a new pot…

In the end I did something very un-Julile-ish. I got rid of my pot and put his in the cabinet. I guess *h won the pot war. I will admit to being very perplexed lately about why people do some of the things they do. The official story here is that *h cares about me and doesn’t want me to get hurt. Unofficially? I guess we had a psychological arm-wrestling match and I lost.

If any of you have some spare time, perhaps you should organize a search party. When you find Julie, let me know, because she clearly appears to be lost…

It Was My Mother

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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?

Sigh.

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.

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