#changing awareness

It’s not your responsibility to correct somebody else’s misunderstanding of you Remember what people think of you is a reflection of how they perceive you.This is a life changing awareness, when you understand that you are not responsible for the behaviors, thoughts, and actions of another person.So never take what people say and do personally, they are reacting to a version of you that their mind created.

1) Act like you're a volunteer. In this instance, think of yourself as a volunteer forwarding the Grand March of Scientific Progress:"Well, I'm involved in health research looking at the long term effects of [name one of your medications] on patients with [name a related diagnosis for the medication]." Now doesn't that sound a lot sexier than, "I deal with nausea all day for which I take phenergan." They'll be fascinated, even if they have no clue about the diagnosis or medication you've rattled off. They'll want to know more: "Oh? What does that involve?" Don't lose your cool. "I meet regularly with doctors as part of a long-term follow-up studies." or "I take part in post-clinical trials. We discuss medication side-effects and other patient issues." Both answers say that you're a study participant. Technically, this is absolutely true. If you have problems with a medication, doctors will report their findings. It doesn't matter that you're a patient as part of that process. Let them guess that you're doing this out of the goodness of your heart. But they'll probably be a bit curious: "Do you actually take the medication?" Just smile with confidence and say, "Oh yes, but it's all under the close supervision of a doctor. And if it's for the advance of science, I don't mind the risk." Now you sound noble and brave. 2) Act like you're a professional. For this one, you're not trying to impersonate an actual health professional. Rather, consider your experience as a health patient in a professional light. Talking to other patients online? That'snetworking. Blogging about your experiences? That's freelance online journalism. Let's take a look at that dreadful question again: "So what do you do?" That question can be followed-up with something like: "I work with outreach programs for patients suffering from [name your diagnosis] in online communities." Which translates from: I greet folks online when they join the health board I'm on and make them feel welcomed. If the party-goer wants more information, you can say something like, "Part of it includes patient education and patient empowerment... Helping people find online resources so they can then help themselves... That sort of thing." Which means: I share with people about our symptoms and point them to cool websites I've found). If they press you for details, you can say something like,"One common issue among [diagnosis] patients is [symptom]. We deal with this by taking a hands-on, team approach leading patients through self-care processes they can do at home. Sometimes we're able to recommend possible treatment courses they haven't tried that they can bring up with their doctor." Which means: I talk to other patients directly (online) and we talk about self-care we can do at home. We exchange ideas about stuff we have heard of and/or tried. Now all that talking on Facebook and in online communities sounds glamorous and self-sacraficing. 3) Act like an activist. If you do anything involved with signing petitions to get the government's help with health care, you can say: I'm involved in political activism for health reform. When they ask questions you can tell them about the challenges facing patients with your disease and about the petition you signed. It always helps to do your homework on what you signed so you can easily talk about the details. Know what the goals of the petition are, who the sponsors are, and how many signatures are currently on it. "I checked quickly just before I came here, just to see how we're doing, and we're up to..." sounds very pro-active and high-minded. Look up other political activity around your disease, even if it's in other states. It sounds very cosmopolitan to be able to say, "Did you know in Florida they're addressing this by..." Or even more worldly still, "In Germany, they're looking into...". It's also great to be able to mention a celebrity who has your condition and the kind of things they're involved in for your disease. You can also look up news stories related to you disease, so you can say things like, "There was an article in the New York Times just the other day on..." Now you sound informed and well-read. Google is a wonderful tool. So there you are! Three ways to fake having a real life, even if most of your time is taken up dealing with symptoms, doctor's visits, treatments and other god-awful necessities of a chronic illness. I bet you didn't realize your life was just that cool! Seen from the proper perspective and framed in the proper way,you too can make this look awesome!! Healthy people will never know the difference. (Unless they get wise to this article. So, shhhh! ;) Enjoy the party!

One of the biggest problems I've had in dealing with my chronic illness and its limitations, is seeing myself as someone I can admire. There were certain preconceived notions I had of where I would be at 38, and my vision was no where near where I actually ended up. Some things I dreamed of---having children from my own body---are impossible for me. It's really easy to look at my life and see how much I've lost. But that kind of thinking gets me nowhere: it's focusing on the negative rather than the positive. If you don't like where you are now, picture a future you that you can live with, and aim for that. Then current circumstances are only temporary hurdles on the road to a greater destination. The easiest way to do that is to visualize who I am to be in the future. When I do this visualization process, I first think of how I want to feel. This woman that I am to become... how does she feel inside? More confidant? Calmer? Happier? More content? More patient? A little more cynical? More outgoing, more reserved, or a little of both? I make sure that the qualities of this future me are qualities I can live with. If she's not happy, I throw that visualization away and find a new one. There's no use imagining a future me that's miserable. This is supposed to be an exercise about where I want to go with my life. Aiming for unhappiness is not that! And our visualization process is exactly that: Aiming ourselves towards a better, future us. After I get the feelings down, then it's usually easy to picture what she looks like: longer hair (because I'm growing mine out), a few more lines and grey hairs (but I don't mind), quick to laugh, but mostly quieter than I am now; more watchful. I picture her in more business attire. Somehow she's figured out how to get some income going again and I've got new suits to show for it. I don't know how she's done it, but have to know all the details! That part of the fun... Figuring out how to make this stuff true! Once I can picture her, I can start listing off the reasons why she is the woman who she is. I know what she does for a living gives her a great sense of purpose. I can see that life has been difficult during the last 10 years, and I don't know what she's been through, but that the trials have made her stronger. I see her working in her new chosen field, and being recognized for her efforts. I see her smiling at the praise, but with humility because she knows the journey was that of a thousand steps. She's been able to make new connections in life and new friends with this line of work. I see her in a convention hall as part of the event organization staff, the applause leaking in from the dining hall, for whomever is speaker at the dinner that evening. When I picture it, the event is important enough to be a cloth-napkin affair, and that thought makes me smile. I imagine her in her off-time, too. She's enjoying hobbies that I like, but didn't bother with before, because I was too busy doing more physical things that are now out of my reach. She's physically active (so that I aim away from being a couch potato), but in a more disciplined, mature way. Her exercise is Tai Chi in the quiet hours around sunrise, not dancing at the clubs to ear-splitting music until 2am. She's quieter than I ever dreamed of being, because it's never something I wanted, more it was thrust upon me by my disease. But I can picture it a sophisticated quiet, rather than quiet from boredom or humdrum. There is plenty of excitement to be had on the intellectual level that doesn't require zooming about physically as well. There are plenty of adventures of the mind that don't require extreme sports for their thrills. When I do this visualization process, and I'm able to come up with a future me that excites me, then Ireally have something to live for: myself! Whenever I start to feel discouraged, I can sit and think about her, my future self, and think about what I need to do to get me there. I make sure to never visualize myself as healthier. That's dangerous---it's a set-up for disappointment should something bad happen. Instead, I make sure I visualize her as broken as I am now, if not moreso. But, to keep myself from despairing over that fact, I envision her as fully capable of handling whatever it is she has going on. That starts me thinking along the lines of problem-solving rather than just problem-despairing. I look at her life (which is not an impossible goal) and wonder, "Okay, now how did she get there?" When that happens, I start thinking about options and opportunities, rather then obstacles. What's amazing to me is when I have a future I can look forward to living, I start automatically doing a lot of self-care activities. One big things I notice is that I'm a lot better about taking care of things that have no real pay-off now, but will have huge pay-off in the long run. My teeth are especially easier to take care of: I want my future me to have good teeth she can enjoy (I don't picture dentures for my future me), so I feel a real incentive to be responsible now. I also get a lot better with my money: I'm able to say to myself, "No, we can't make that impulse buy, even though we want to. We've got plans, and those come first." It's easier to make small sacrifices now, even though my self-pity/inner child wants the quick emotional fix of a right-now purchase (even for something as small as a box of Tic Tacs). When I know I'm working towards a goal, it becomes easier for me to defer gratification. Yes, I want the Tic Tacs now. But that satisfaction will fade quicker than the orange, sugary, candy after-taste. If we want real, lasting satisfaction, let's go for this bigger, long-term goal, instead... Self-talk like this helps me enhance my patience with my desires-of-the-moment, and choose actions that are more beneficial overall. Try it for yourself, and see what happens! 1) Picture a future you that you like and admire, who successfully lives with your disease. What do they look like? How are they different from you now? 2) Imagine what it feels like to be that person. What does it feel like when they laugh? What do they feel like when they've see a long, lost friend? How do they feel physically when they run across something that melts their heart? 3) Visualize them moving through their life. What do you see them doing? What do they do in their off-time? Given your current limitations, what have they figured out to do to get past them or make peace with them? 4) Ask yourself, is this someone I want to become? If not, revisualize your future self until you can answer: Yes. 5) Figure out how to get from here to there. Good luck, and happy daydreaming!!

For the folks who aren’t chronically ill, think of every time you’ve been injured or severely sick. Perhaps a broken bone or pneumonia landed you in the hospital once. There were doctors and medications and instructions. You did everything they asked, all the while upset that you had to deal with this (rightly so) and wondering, “When, oh, when does it get to be OVER?!” Imagine that time. Remember being stuck in it, and all the things you couldn’t do, all the help you had to ask for, how much of an inconvenience it all was, how people had to be patient with you… Now imagine all that, but knowing that it’s never going to be “over.” It’s never going to get better. That your body will only get worse given time. Those crutches are staying. Those medications are part of your life now. The doctors and staff at the ER will know more about your life than your hairdresser. You’ll actually hear those terms enough times to know how to pronounce them. People will stop being patient and wonder why you haven’t learned to live with it yet, even though the symptoms feel as fresh as day one, every time. Vomiting always feels like vomiting. Kidney stones always feel like kidney stones. What we do get better at, in the long run, is getting angry at it. Our disease (literally dis-ease) is something we hate about our life. It’s like being shackled to a monster. We have to drag this ugly, demanding thing around with us every where we go! It’s never notthere. We can sometimes forget for a little while (#epicwinning), but it always comes back. We hate it about our lives, and we hate it about ourselves. Even though the disease may be the responsible party, we, the person, have to take responsibility for it. “I’m sorry, I tripped over my disease. I’m sorry, my disease is throwing a tantrum. I’m sorry, my disease is a jerk and won’t let me come out to play…” Pretty soon, I feel like the jerk having to explain all the time… But it’s really, really dangerous to look at my disease this way. Pretty soon, I’m hating me. And that’s the least constructive place I can be. My neighbor is involved in mix martial arts and she has inspired me. She's a cute little thing and you never would guess she could kick your butt. I was looking at some of her videos from a recent tournament. How those ladies compete is not a natural way to move. Watching the competition videos with her she would point out her mistakes, "now if I was paying attention there, she wouldn't have gotten me into that lock...". After the tournament, she had mean bruises and a few nasty bumps on her head. But these injuries didn't make her a victim. They made her a bad-ass. Pain and suffering isn't always a negative thing. If it is pain and suffering we have chosen to accept (as, say, a means to an end) then we're a lot less likely to feel tragic about it. It's part of the process, right? Just the price of admission... We all understand that good things generally have a price tag stuck on 'em in some way. Whether it's enduring hundreds of class-hours for a degree, or working your way up the ranks in the military, or meticulously watching your weight to look good for your 20th high school reunion, we understand pain is a part of life. So isn't it reasonable, then, to say that the pain and suffering of my disease is no different? Pain is pain. It's the same nervous system. It's the same brain activity. So why would the bumps and bruises I get from one activity could be seen as triumphant, and the bumps and bruises of another activity seen as evidence of loss? They get you the same funny looks at first... "What the hell happened to you?!" I have a scar through my eyebrow from a freak croquet accident (a long story for another day). The doctor who stitched me up told me to tell everyone I was on a secret German fencing team, and to graduate, everyone must leave with a scar. This one is mine. A scar on a woman's face on its own could be something to really be ashamed of, but add the cool story and it becomes mysterious and romantic... Part of the problem is the frustration. I used to be able to walk just fine, thank you very much. I could leave my car at home, walk 5 miles, go shopping, and walk home again... just because it was a nice day. Now I have to hope that a nice day outside coincides with a nice day inside my body so that I can enjoy the day! And I have to drive. And sitting for most of the time is mandatory. Bah!! That certainly takes the fun out! I can compare my life now to the life I knew before I got sick, and it will fall short in a lot of ways. My dreams at night tease me with visions of a body that follows my commands, instead of commands me about... I can dwell on all of that and be miserable. Or, I can envision that I am on a quest to earn my black-belt in illness arts... That the bumps and bruises are testimony to learning process and something to be honored by rather than ashamed of. Yes, I am dealing with a storm of invisible problems that makes it difficult for other people to have sympathy for me. But I don't look sick? Thank you! I was hoping it wasn't immediately obvious. Just because other people have difficulty recognizing my problems and accomplishments, does that mean I should devalue my efforts too? Absolutely not. I may not be able to get over this. But I can find a way through despite it. I don't have to find the light at the end of the tunnel. I can BE the light instead.

I have heard people say time and time again that they don't know how I do it. "That is entirely too much for a person to handle!" I've had one say. And yet to me... I can't give it any credit. When I get taken over by these dire health moments, it's luck and instinct. It has nothing to do with me. I'm just holding on! I'm not clever or wonderful in these moments. I'm just a living organism desperate to keep living. I believe every one of you would do just as well, if not better, in my shoes. You'd get the job done, and probably with less whining and kibitzing! I honestly wish I could shut up about all of this and just live life, but I've been unable to do so. Instead I've turned it into a blog so I can fake that all my complaining is respectable. Funny thing is, I accidently found a way to make it successful. (Sometimes it seems the only way I find success is to trip over it.) I started this blog because I was miserable. In my mind, I was a wretched thing like something out of aDickens nightmare. I was huddled in the darkness, alone and doomed. Then the other part of my mind kicked in. This part of my mind was more like the Ghost of Christmas Present, gentle and joyful. She laid a hand on that wretched child's shoulder and said, "Now see here... You know you're not the only one going through this and you know you don't have it as bad as you could. If you want to learn how to do something yourself, try teaching it to someone else, remember? Now think... if you wanted to teach someone else how to get through this, how would you do it?" And like a dawn breaking, suddenly I wasn't in the darkness. I was in a lecture hall. I wasn't dressed in rags anymore, I was in a nice wool suit. And I also wasn't a child... I was an adult, standing tall. The lecture hall I had in mind was very specific. It was the lecture halls I had when I was a science major at Saint Louis University. There, the seats slope downwards like in a theater, to accommodate class sizes of 300 students. But more importantly in my mind, I'd be lecturing from a point where the students look down at me. Yes, I'm the one lecturing. But I must always remember to present my teachings as a gift or an offering. Because in the end, it's not my lecture that's important. It's what the students can make from it that is. Suddenly, everything I'd suffered was of value. These weren't just things I had to go through in my life. These were now things that I could use to help make someone else's life better. It wasn't just my loss. It was someone else's gain. And then too, my inability to shut up about it suddenly became a boon. It was no longer embarrassing that I was an unabashed exhibitionist, ready to share the details of my personal life with strangers. Now, I'm an activist, inspiring others to share their experience, strength and hope as well! How the heck did that happen? One thing I will give myself credit for is that I refuse to surrender. Sometimes, that's a terrible trait to have, especially when someone wants to be left alone! But like the title of this entry (given to me by my lovely cousin, Jeremy Diakonov-Curtis), I've decided to reshuffle the deck. The things that give me trouble I will use to make some good. The things I am terrible at, I will admit, so that others can know they're not alone. Like any human being, I have my weak moments. And like most people, I underestimate my own abilities and don't give myself enough credit.  It's difficult to be kind to myself in a world where I have trouble fitting in and keeping up. My random yelps of pain and discomfort are disturbing to people. That's not an unnatural response. And I feel guilty when I cause that discomfort in others. It would be as if I had picked my nose at the table. Not good! If you invite someone somewhere twenty times and it's "no" every time, pretty soon, you just stop inviting. It doesn't matter that the 21st time would have been "yes." So I push myself to go out sometimes, when I know I shouldn't, because I want to keep getting invitations. It's these little, simple things that I fail at, that weigh so heavily on my soul.  Because from the outside, I know you can't tell the difference. I look fine. Stunning, even, sometimes. I don't look like there's all this going on in my life. There's no way to tell that I'm not just irresponsible and lazy. With other sick people, they know immediately. There are experiences that can't be explained, but you can tell by the way they talk and act that they've actually been there. There's a knowing. You can see the dark wisdom in their eyes. It's like a "you had to be there" conversation. Do you get the... And then the... Oh! And sometimes.... And have you ever?.. It's like meeting another member of a fan club, only it's a fandom that no one wants to be a part of!  This illness has made me into someone that I don't like, and that I have trouble admiring. I wanted to take a dream opportunity of being a live-in nanny for a friend of mine and her two wonderful daughters, and I just can't. I'm lucky for the time I can spend with them. I am in no way, that level of reliable, yet---to be able to care for children. It breaks my heart. I don't get to be the woman I want to be. I only get to be the woman I can be. I'm going to have to let what I want, go. I'm going to have to figure out how to be a woman I can be proud of, anyway. And like before, it's going to take seeing my situation in a new way. So I've got to reshuffle. I've got to change things up to make things work. I can't judge my life now based on how I used to be able to live it. That's just not fair. But, in a way, I don't know that is fair. In a way, the only one who can determine whether I'm actually living up to my potential is me. And I'm not always good at being honest with myself. That leaves me with only one answer. FORGIVENESS I'm going to have to allow myself a lot of mistakes. I'm going to have to eat crow, and worms, and bite some bullets. I'm just going to have to be okay with the fact that I suck sometimes. Sometimes you're an all-powerful wizard. Sometimes you're just a guy in a funny hat. But I've done this before, when I didn't even intend to. I've been able to turn my situation around and find the good in it, even with everything it threw at me. I stopped worrying about me, and started worrying about other people. Now that I've changed my focus, I'm not alone... Now, the fight isn't just about me... Now, I have the courage to stand up and lead the charge again... Deal the cards. Let's play...