Tag Archives: family

Pain.

This came into my life and I think it should be required reading for all human beings, and posted in every doctor’s office. LETTER TO PEOPLE WITHOUT CHRONIC PAIN.

Yesterday, while looking at my battered slippers on my socked feet, I started to cry. My mind had immediately jumped to my dad and all the physical pain he experienced as an adult. For weeks, sometimes months on end, he literally couldn’t move off of the couch or out of a hospital bed that was directly next to my parents regular bed. I thought about how for a long time, the only gifts we could think of to get him on holidays or his birthday were things that he could wear or use when he was laid up in this way. It was always new bedclothes, slippers, or  something like an extender-grabber for when he dropped things since he couldn’t bend or get off the couch to retrieve items for himself.

I was crying because I’ve been married 3 months to my wonderful husband, and out of work for roughly 4 months because of my back and this absolutely debilitating pain. Money is tight, stress is high, and I am literally in pain 100% of the time. I can’t keep my own house clean, I can’t make us dinner if it means I have to stand for over 5 or 10 minutes at a time. When I do get out of the house, it’s carefully planned and easily canceled if I’m in any sort of pain. There isn’t another option. I have to take cabs, the closest bus and subway is half a mile which is just too much right now. Making the decision to attempt a walk somewhere, or to hope there are comfortable seats available at a restaurant or bar, could mean that I wind up in a pain that I still don’t have words for, unable to dress myself and bawling in the fetal position for 6 to 9 hours with absolutely no relief.

This, as you can maybe imagine, causes major anxiety. Anxiety causes muscles to tense up, making pain worse. Anxiety and tight muscles make it hard to sleep, which makes anxiety worse, which makes pain worse. Tossing and turning has, more than once, been the cause of a day of hellish agony. Being unable to work, being stuck at home, causes depression to develop/reawaken and worsen with each passing day. And this doesn’t even go into the guilt, the weight of being truly shiftless when one desperately wants to be a part of productive society or get back into school. Forget the loneliness. People forget how to talk to you if they don’t just forget about you entirely. It’s too much for them to deal with. I don’t blame them.

My back went out for the first time 8 years ago, the day after President Obama was elected. We had thrown a party in our Lower Haight apartment on election night and, as you can imagine, there was a lot of standing around, being excited and running into the streets, and wild abundant celebration. The next day I couldn’t walk. I remember, really, barely making it to the polls the day before, I was already feeling pain in my lower back. I didn’t fall or have any kind of accident, it just started. It’s never been looked at by a doctor, because those first 4 years or so, the pain entirely disappeared with a days rest.

It came back with a vengeance when I was working at a jewelry store, but only really caused extreme discomfort rather than knocking me off my feet. (But it was still  horrible.) It was when I was tutoring in Manhattan that I woke up for the first time and couldn’t get out of bed to use the bathroom. I couldn’t move, I felt paralyzed. I couldn’t feel or move my legs, and my lower back was on fire. The pain is impossible to describe. It starts small and gets big, fast. Aaron had to help me to do anything, everything, and after a day or two I made it to an out-of-pocket doctor who gave me drugs and wrote me a note to get me out of work for a week. She told me I had a pinched nerve and to rest, take baths, and it should sort itself out. It was the first diagnosis I was ever given about my pain.

Since then, it’s been hit or miss. I managed to get a degree at a nearby enough university that I didn’t have to be on the train for more than 20 minutes, and never really had to wait more than 10. I had a job at a wonderful imports gallery, but it turned out to be a less than perfect fit. Worked at what has totally turned out to be my favorite job ever at a beautiful florist in Park Slope, that sadly turned impossible due to the physical nature of the job (which was my favorite fucking part of the whole thing, really.) I’d much rather be moving than sitting. Even at home (before all of this,) I find it hard to relax when I am on my own and would wind up cleaning the house from top to bottom on sometimes a twice a week (or more) rhythm.

My back has gone out 7 or 8 times in the last 5 – 6 weeks. I feel it all the time. A smile on my face or getting out of the house for one afternoon or evening does not mean I am feeling better. The ability to get down the stairs a little easier does not mean I am feeling better. It means I am making it work, and nothing more. I am in pain every moment I am awake. It is the first thing that occurs to me in the morning, and the last thing I worry about while I arrange my body to fall asleep comfortably as possible. I wake up all night, every time I turn over, because of the simple fact that it hurts. If I wind up on my back during sleep, I might not be able to get up in the morning.

In fact, I’ve taken a small break from finishing this particular post and in that short interim my back has gone out twice. The last time was after waiting in line to vote in the election. 10 hours of misery as the results rolled in. I still haven’t quite found the right words to turn my pain into literature. To be absolutely frank, it’s the scariest thing I think I’ve ever gone through. I don’t know what’s happening, and when in the throes I have some of the ugliest, most frightening thoughts I’ve ever experienced. It often feels like it would be easier to give it all up than go through another moment of torment. I’m not trying to be dramatic or ask for help at this moment, just honest as fuck with you.

I made an appointment, I finally have my insurance. I have an appointment on the 23rd of this month and I’m nervous as hell and very excited all at the same time. Excited might not be the right word. Maybe anxious, to get started. I have to keep reminding myself that this first step probably won’t tell me anything at all, but it will hopefully get things rolling. A referral for an X-ray would be most excellent. Renewing my prescriptions through my insurance would be incredible, paying out of pocket is not an option.

 

 

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Scared.

I’m not sure when it happened or why, I’m not even sure there was a particular catalyst that ended my prolific content assault on the internet. One day I woke up and it just felt really hard to be honest and open online.

When I first joined the internet, it was through AOL. My screen name was CandyJRT. I lived in chat rooms and quickly started seeking out social websites to join like Bolt and, later on, LiveJournal. I made friends over AOL Instant Messenger when I was 16 that lived on other other side of the country that stayed so relevant in my life that they wound up in my wedding just a few months ago. I got in all kinds of arguments on Bolt — from reproductive rights to right to die laws. At one point, getting into flame wars with strangers online was my one singular joy. I would be up all night, and wake up before the sun. Then it was Gay.com, fighting with the troll bigots that would sneak onto the site just to abuse people. I was barely sleeping. But DAMN I was writing like 5 or 6 posts a day. Forget about it when MySpace came around. THE SURVEYS.

I don’t think I can name the one thing that happened that changed my online world because I think it was a number of things.

There was, first, that inevitable growing-up time, with all of it’s associated pains. Lots of people tend to lose some of their very best friends in their early twenties. People grow in different directions, others move, goals change, loves change, life experiences happen and judgements are made and we all say a bunch of stupid shit to each other. On the other side you come out the stronger for it and surrounded, hopefully, by those that were always supportive and loving. This period of your life, however, can be made particularly strange with the invention and connection of social media. I changed LiveJournals 3 or 4 times, back then. I’ve edited privacy settings from public to private more times than I could possibly count, for phantom reasons. Then there was that whole Facebook thing that really spoiled everything that was wonderful about the internet. Suddenly parents, aunts, uncles, grandparents, family friends, cousins, teachers, pastors, exes, choir directors, school administrators and everyone else was on the web that you wouldn’t necessarily let in on every aspect on your life — especially your internet life.

When I first got on the internet it was because I was a HUGE FUCKING NERD. The “cool” kids weren’t asking if you were on AIM during my freshman year of high school. The “cool” kids weren’t teaching themselves basic HTML and building geocities websites or creating custom LiveJournal layouts and pretending to by Britney Spears in their spare time. There wasn’t even a word for that, yet! Catfishing? Jesus. People looked at you like you were some kind of freak if you spent all of your spare hours staring into a screen chatting with people you’ve never met in real life. It was a safe haven for weirdos, before cyberbullying blew up. It was where I made some life long friends. I bonded with people in real life, learning how to take apart our PCs and put them back together again. A trip to Fry’s was a treat, purchasing an upgraded video card or a new monitor.

But, everything’s so easy now. Macs really changed the accessibility game and they’re still at it today. I still think there could be a swing back toward PCs, it’s just a matter of hitting on something magic. That’s what happened to Apple with the iPod, because lord knows it wasn’t the candy colored iMac that brought them back in to the mainstream. So, now, everyone calls themselves a nerd, sometimes “ironically”. Everyone is on the internet, all the time. There is no tight community, there is only now a virtual representation of the most fucked up parts of real world, concentrated on several huge, epic social networks. Bullies alongside language policing and “you shouldn’t really post that on Facebook”s and all kinds of other garbage clog the flow of information. A lot of us used to say things on the internet and DARE anyone to come for us on the subject. Now, I just don’t feel the same way about it all. Some people do. I don’t.

Like, my dad used to think that every single person I talked to on the internet was a phony. And before he passed away he was cruising his smart phone like nobody’s business. I woke up yesterday to an alert that my mother had joined Twitter.

Anyway, what I’m trying to say is I experience a lot of anxiety and fear when I sit down with the intention of writing in a public blog, now. This is especially true if it’s something that other people will have equally strong, but dissenting opinions in regards to the matter being discussed. It just so figures I would be most passionate in situations of injustice and inequality. It’s not like that gets people all fired up or anything.

I figure I better end this because those feelings are creeping up on me and I don’t want to back down. So I’m going to schedule this post and move on to something else in my day.