Tuesday, February 28, 2012

Faith in sickness and pain

When we talk about faith, it doesn't have to be about the divine. Regardless of what faith your are, or if you have no religious faith at all, a chronic illness can really test your beliefs. I'm on the fence as to whether there is a God, or gods, or whatever. But that doesn't mean that I have a lack of faith. Faith is still fundamental to human existence. I see faith as the absolute confidence that something is true, even if it hasn't come to be yet. Faith to me doesn't even have to be spiritual. It can be faith that the electricity will work (the bill is paid). All types of faiths get challenged in sickness and pain, and there are several ways to respond. I choose to respond in the way that best benefits the situation.

I have faith in humanity, and faith that people are basically good. Do I know that stranger is good? No... But I believe they are until they give me proof otherwise. If that stranger proves to be shifty, I have all sorts of countermeasures I can use to protect myself. However, when it comes to my faith in my friends, I get evidence that could be seen as "otherwise." Getting sick isolates me from other people and makes it difficult for people to want to visit me. We have a strange aversion to illness and injury as a species. I've seen it happen to myself, to friends of mine, and in other cultures. Sickness and injury, at a primal, subconscious level, are a sign of weakness and something to be avoided. Going really, really primal, it means that you're likely to be picked off by the wolves. Other people will stay away because of that, and not realize they're doing it for that reason. That can really test my faith that people are basically good. We would all like to think that if we got sick or ill, people would rally around us, tend to us, makes us better and bring us back into the fold. But generally, that's not how it happens. I know there is the urge in me, if I can get better/when I do get better, to just leave this all behind and never talk about it again. Go back to "normal" and leave this in the past. I doubt I'll do that (I know too much to forsake those I'd leave behind), but the urge is there. So in this case, my faith is convenient and sometimes contrary to evidence. I will lose faith in that stranger the moment they make a untoward movement. I will keep faith in my friends even with evidence to the contrary, because I prefer keeping my friends.

My faith can be faith that my body will be in similar condition tomorrow as it is today. It can be faith that the floor will be there when I put my foot down. It can be faith that what I'm feeling is real. All of this gets thrown on its head in sickness and injury. Where I think the floor is may not actually be where the floor is. What I'm feeling, whether physically or emotionally, may be a complete fabrication of my nervous system and have nothing to do with reality. And when I wake up in the morning, it may be in a condition that takes me completely by surprise. It's very difficult to wake up and immediately be able to tend to some dire bodily need. And by dire, I mean things like vomiting, severe pain, and what I affectionately call the "splodie butt." But I have faith that my body will work anyway, because it's useless to stay up worrying---which will make me sick---over the possibility that I might be sick. I have no faith in my feelings. I always doubt them and test them against reality. I have neuropathy and PTSD. I know my feelings and sensations are often wrong. I have faith that the floor will be there. I'm not always right, but I'm good at managing the fallout when I'm wrong, so I don't mind keeping that faith.

I have faith that time will eventually change things for the better. Does that mean I'll survive long enough to see that goodness? No... But I believe it could be right around the corner. That's good enough. However, when things start changing from bad to worse, this really comes under fire. At some point, everyone starts to wonder, "Just how long can this go on? What did I do to deserve this?" Limits are strained, broken, or downright obliterated. That can easily be seen as evidence that things are not going to get better soon enough. But I've got to hold on to that faith anyway because the alternative is worthless. I want to be someone who fights until I'm absolutely overwhelmed. I've been at that point where I was so sick I didn't know what was going on, and a team of doctors was fighting to keep me alive. I have sworn to myself that no one is going to be able to say I gave up easy. If my death is anything, I want it to be respectable. And I have faith that I can keep that promise to myself. Is that true? Who knows!? And it doesn't matter. The faith is what's important.

Do I have faith in a benevolent spirit that has some concept of sin and holiness? I don't know that that's true. I do, however, have faith in mystery. Some things work out and we have no idea why. Some things don't work or work only sometimes and we don't know why. There are some things that only work when we're not looking at them and we don't know why. I have faith that there are bigger and stranger things out there than my little mind can comprehend. Could that include a benevolent spirit that has some concept of sin and holiness that is watching over me? Sure! But does it matter? If it matters to you that you go to Church/Synagogue/Mosque, then it matters to you and that's good enough. Me, some days the ritual of prayers helps. Other days, I think if there is such a Higher Power, we're going to go a few rounds before this is all over (so it's more comforting at such times to think such a being is impossible). Some days I think this is all there is. Some days, it's downright spooky. Here, my faith is complicated, complex, and I'm not even sure I understand it myself!

So faith can take many forms, it can wax and wane, and it can be clear as mud sometimes. It's still a human activity that we all engage in. It can be mundane or divine, metaphysical or physical, and everything in between. Injury and illness, pain and sickness, will test faith in a number of ways. We struggle to hold on. Sometimes, we find we have to let go. But I try to do so in ways that enhance the situation rather than make it worse. Sure, that means biting the bullet or dealing with upsets, but that's life, right? We pick ourselves up, have faith in a number of ways, and keep going. How's your faith today?

Monday, February 27, 2012

Why dwell on failure?

"I've set my teeth," is an old family saying meaning: to decide with amazing stubbornness. I may get knocked down. I may wail and despair for a moment or two. Then I set my teeth, figure out what's next, and get on with it. I refuse to spend my life feeling sorry for myself. It gets me nowhere. Yeah, it's bad. But I've gotten over that. It's old news. It was terrifying at first. Nowadays, the story is boring. I've told it a million times. Yes, I have a rare and complicated condition that makes living very tricky. But, I'm living aren't I? I can still contribute to the world in a meaningful way. I may accomplish that in a completely unorthodox way, but there is honor in being a trailblazer. This is certainly not what I thought I'd grow up to be. But what it has turned out to be, I'm making the best of.

We're taught in school that getting the right answer is the all important thing. The kid that fails is the dummy, the slacker, the good-for-nothing. There's a right way and a wrong way and the wrong way is to avoided at all costs. But that's not how the real world works. In the real world, often there isn't a right answer. In the real world, sometimes failure is the best thing that can happen. In real world stories, they all run essentially the same way: "I thought this one thing was going to happen, then something completely different happened, and it all turned out like this."

I thought I was going to have my career, get married, have kids, deal with the problems of parent teacher associations, deal with other soccer moms, get divorced, and figure out how to be an awesome single-parent household. Maybe getting remarried later down the line when the kids are older. That seemed probable to me. Getting disabled at such a young age as to be considered "Retired" by the Social Security Administration (and having the body of a retired person to match)... No... I never did think of that being in the cards. Who would?? I had dealt with a 3 year knee injury as a teen. I was no stranger to chronic health issues. But I figured every problem had a solution, right? No... there are still plenty of mysteries out there. We know oh, so very little.

These days, I've learned to linger on the failures just long enough to figure out what went wrong. I take responsibility for my part, but I don't beat myself up about it. Failure is usually memorable enough without additional self-abuse. I figure out the past, and move on. Sometimes I need a rest, so I can find a new approach for the future, and then go again. If I'm set on my goal, I try to exhaust all available avenues, and make new ones if I have to. Time will also present opportunities that didn't exist before. And I don't have to have faith that it will all work out, because that's not the point. The point is doing the best with what we've got.

As children, we have dreams. Then, as we learn, we see how our dreams were unrealistic, born of ignorance, and need some fine-tuning if we actually want to make them come true. This happens time and time again. We think one thing, then we test it against reality. The outcome may be a total surprise, or it may be what we expected. Most of the time, it's a mix of both. We take this new information, we think new thoughts, and then we test those against reality... and so on. The right answer isn't what's important. Knowing what to do when we get things wrong is.

However, we don't teach what to do when things go wrong in our schools. We say: study, memorize. If you're wrong, you're a failure and need to be held back until you can get it right. But in the real world, sometimes that's impossible. I mean, yes, you can study your little heart out and memorize all sorts of things. But sometimes, we're in an area where there's little study and we don't know what's right from what's wrong. Sometimes, we're in a situation where there is no right answer. And sometimes, the answer doesn't matter so long as it works.

I set down certain principles for myself: I must do my undertaking legally and honorably, because I like being able to sleep at night at look at myself in the eye in the mirror. After that? It doesn't really matter. It may take a long time. It may take multiple efforts. It may take an unorthodox route. (Can you imagine having your holistic doctor calling the ambulance to take you to the western hospital? That was my first clue...) But this isn't for a film crew. I'm not on a reality TV show. I'm just a gal living my life. That's messy sometimes. This isn't about perfect, so it's not about failure either. No one is handing out a report card at the end of my life.

What matters is, after my principles are met, am I okay with how I'm handling my life? Do I really need to be doing what I'm doing? Do I need to be doing it in the way I'm doing it? How does it matter to me? I'm the one who has to suffer the consequences, so these decisions are my responsibility. And yeah, I'm willing to bite the bullet that sometimes, I'm going to screw up, things are going to go wrong, or the unexpected will happen. That's life! There is no deserving or not deserving in there. It's only in story books that wizards appear to tell you you're the chosen one and here's your life's path. In the real world, most people make their life path by just setting off in a direction.

So if it's not about right and wrong answers, but results... And if it's also not about deserving or not deserving, but getting the job done... What is it I want of my life, that I think is attainable? Let's go for that. Is it going to be scary? Absolutely! Are there going to be hard times? Like we can't imagine. Are we going to encounter failure? For sure. But all journeys have these things. You'll have that on a job this size. Every great success has a heap of mistakes in its past. So why dwell on failure?

Saturday, February 25, 2012

Opioid Narcotics!!! Why have you forsaken me?!?!?

I can't take narcotics anymore, and it's not for all the reasons we see in the media. Here I thought it was just a matter of communication and proving myself a model, responsible patient. I could get the narcotics, return to work and get on with my life. The best laid plans of mice and men often go wrong. I got the communication down. I proved myself a model citizen. I got the extended release morphine pills.... and they're worthless!! I can't be on a medication that makes me feel like I have the flu if I decided to sleep in on a Saturday morning.

The problem is if I don't take it at the same time every day---that means weekends, holidays, days with the flu, zombie apocalypse, it doesn't matter... If I don't take the medication at the same time every day, I get withdrawals. I'm on a baby dose compared to what I took back in the day for my migraines. I used to be able to go a few days before I started getting withdrawal symptoms. Not anymore. Now it's hours. If I get food poisoning, stomach flu or a bad migraine where I can't keep a pill in my system, I'm screwed. I'm trying to make my body more reliable. Not less reliable. So now, the payoff is not worth the price. This sucks!!! I refuse to start my mornings shivering in cold sweats. I remember now why I took myself off these damn things as soon as we had fixed the migraines.

It's ironic to me that doctors would keep such a safeguard on opioids. Right now, everyone acts like they're this siren's song, that once you taste of the forbidden fruit, you'll never want to return to the shores of reality... Dear lord, opioids are not that wonderful!!! They don't imbue me with a sense of community and family. They don't fill me with a feeling of purpose. They don't give me a sense of self-esteem. They're a tool that allows me greater access to my body so I can achieve those other things. And unfortunately for me, they're a lousy tool at that.

Last night I dreamt that I was running my own little cafe/bakery. I was dealing with customers, shipping and stocking, arranging the little cupcake treats in the display case. It's an old childhood dream of mine that I sometimes actually dream about. All mundane. And wonderful. Because it's with none of the thoughts that I normally have to have to get through a day. When I dream, I always dream of a not-sick me... a not-in-pain me... a me that isn't suddenly surprised by physical limitations or symptoms. In the dream, when I want to do something, I simply do it.

I woke up to a body that was not my own---it belonged to the symptoms. There was no deciding what to do with my morning. It had already decided for me. I was going to have muscle spasms in my throat. I was going to alternate between feeling like I'm starving and feeling like I wanted to vomit. I would go from boiling hot to freezing cold and back again in moments. I was going to shake. I was going to be irritable and self-centered. I was going to be miserable, until I'd swallowed the right things, did the right stretches, took a shower and all the other things my body demanded, first. I am not going to wake up like this ever again if I can help it.

I may never get back to a place of wellness again. My life might always be complicated health-wise. I'm strong. I can take it. But I'm not about to be making a situation worse. I'm no fool. And it's plain enough that for me, at least, opioid narcotics are not the answer. Not at this time. Not for these reasons. I simply have to find another way. I have to wait for the science to evolve, a new drug or therapy developed, something... I'm going to go back to the pain clinic and let them know that I don't want opioids.

Back to the drawing board.

Edited to add:
It's absolutely the narcotics. If I try to sleep in to rest, my body turns into feeling like it's on the surface of Venus and on the continent of Antarctica, all at the same time. The second these damn kidney stones are out, I'm off these things. Done.

Added March 6, 2012
Spoke with my GP and we're going to change around how I just my medication. The Ultram is going to be for break-through pain, instead of all day, and I'm going to see if switching that behavior and keeping the extended release morphine cuts down on the withdrawal. It is helping, so he wants me to try this. Neither of us wants me to go any higher, so I can try staying off the night time dose. However, if it's still a problem, I can come back in and we can discuss things further.

Friday, February 24, 2012

Would I trade the last 10 years?

This might be a strange thing to whine about, but I *HATE* being unemployed. Not just for the money, although the money is excellent. I mean just having something to do with eight hours of my day. Spending eight hours of my day doing something that I'm good at and that fills me with a sense of pride sounds like heaven right about now. Being able to wake up, clock into my 9-5, put in my good day's work and going home to spend my time my way would be a dream come true. And I had that dream for a while. Now, I find it hard to know what to do with myself. I never was the type of person who dreamed of doing less with my life.

Some people would envy the heck out of me: I sit around on the government dole and play computer games all day. I could think of nothing more tedious. Work gave me puzzles and problems to solve, things to learn, people to interact with, systems to uncover, and ways of simplifying to discover, and it paid me to do so. It engaged my mind and allowed me to deal with other intelligent professionals on a regular basis. Granted, those dealings weren't always the most joyful, but that was part of the excitement too! Finding the diplomatic path to get the job done... I really loved my work.

Some days I feel so close to being able to go back there, I can smell the Starbucks. Other days I wonder how long is it going to take to get me up on my knees, let alone my feet. After the first month of pain, I was all, "Something's really wrong here." After the first three months I was wondering, "How long can this last?" After six months, I thought, "Okay, screw how long is this going to last, how am I going to eat??" After nine, I was no longer ashamed of applying for welfare. After a year, four... ten... I've forgotten what my life before was like. It's almost lost to the mists of memory. Am I even the same person? Is there any way I could be?

There's an old crone who lives in the back of my head. I like to think she's me, all ALL grown up, wise beyond my imagining. She pipes up with, "Of course not! But you weren't going to be the same you in ten years no matter what. So the real question is, has what you've gained in the last ten years been worth what you otherwise could have been doing with your time?"

And I've got to look... ten years of my career path? Or ten years of this life path? Ouch. There is wisdom I have learned that I would not trade for all the American-held debt in China. I have learned communication skills that I never would have picked up while on the job because there's nothing quite like the communication issues between doctors and patients. There is strength in me now that I wouldn't have gotten otherwise, because I certainly wouldn't have volunteered to go through that much. Dear lord, that's not sane! I know the limits of my body like some mechanics know the limits of a finely crafted engine. I may feel guilty for tapping out for the day, but I never feel I've misjudged.

When I have the energy, I do more without thinking about it. When I don't, I'll notice I've slowed down and take stock to see what's up. My food cravings are also telling, and I follow them almost religiously. (Although a craving for sushi is never justified. There isn't a day I'm alive I won't crave Japanese food.) I have a good track of my mood (or so my therapist tells me). I seem to have gotten the knack of running the machinery of me, regardless of how asplodie it is. That's something I take great pride in, though I know I can be humbled easily at any moment!

So no, I would not trade my last 10 years for the 10 I had planned, much as I still miss it so. I still would like to aim my life in that direction, because I still like eating (and Japanese is expensive!). And although I would like to wake up in the morning and know what to expect of my body. Thank goodness for technology, because I have found ways around being physically unreliable for a 9-5 job. A writer can work at almost any hour, and on the internet, no one needs to know you're still in your bathrobe.

PS - I am still taking donations for my trip to Seattle. I am at 10% Awesome!

Wednesday, February 22, 2012

When it all feels like consequences...

A friend of mine recently had hip surgery following a car accident (which, thank the gods, alerted the doctors to the bone cancer...). My friend was complaining that, although he had had a good night's sleep, it meant he had missed his scheduled pain control and now was feeling hideous. Another friend, very well meaning, said, "well, at least you got a good night's sleep!" And in that moment I suddenly found the right words I'd been searching for, for years: "It's hard to celebrate the good stuff, when it has consequences just like bad stuff."

We're taught that consequences follow actions. The laws of cause and effect. We learn, as we grow up, that although our parents may not be around to punish us, some actions have built-in punishment: waiting the last minute trying to pull an all-nighter, going on that weekend bender, flying too close to the sun... And hopefully, we learn, that in order to avoid consequences, we don't do the bad thing in the first place. We balance desires with our values and experience. We delay gratification for "right now" in order to accomplish even greater in the future. Yes, studying doesn't feel good right now... but getting your foot in the door because you have a degree is better than fun. It can mean the difference between eating what you want and eating what you can afford.

So it's really, really difficult when that whole system gets thrown on its head. When getting a good night's sleep isn't rewarded with a day of feeling well-rested, but a day of agonizing pain. To steal from Terry Pratchett: sometimes it isn't about good or bad choices... sometimes it's just about choices. I've found that life becomes really difficult to gauge when there's no way of knowing that what i'm doing is right, but knowing, no mater what, there's something I'm doing wrong, that I'm only going to find out about when it bites me in the @$$. That's a really, really, uncomfortable way to live. And sometimes life is like that. No amount of applauding is going to help. The best medicine, in my experience, is straight-up laughter.

The U.S. military has an "unofficial" set of acronyms for this: SNAFU, TARFU, and FUBAR. Situation Normal: All Fouled Up; Things Are Really Fouled Up; and Fouled Up Beyond All Recognition. The first one is usually said in resignation that things are screwed, and yelling and screaming isn't going to help. The second one is generally said with eyes wide, as things are serious now. The last one is used when so much is going wrong it has just gotten absurd.

That's the point at which we really learn human limitations, and just how amazing it is that we can get anything done. It's the point at which we see humanity for what it is, and how we all take ourselves so seriously, but that things haven't changed. We're all making the same mistakes. We're all still fighting over the same petty things. Shakespeare is still relevant because we haven't grown up a bit in the last 400 years!!! We might need to change the language up a little bit, but we still understand the story... we still understand the feelings... We're all still... human.

When it all feels like consequences, when it's difficult to celebrate the successes, what else is still available? Laughing. Wry, bitter-sweet laughter. Deep, surprising laughter. Not just, "I will acknowledge that that statement is funny" laughter, but genuinely-felt laughter. Laughing at ourselves laughter. (That's the best one because it's the most healing.) The moment we can laugh is the moment we've let go of the anguish. Laughter, more than anything else, can raise morale and breathe life into the dying.

Life is still life, and sometimes it's not fair. Sometimes there is no right way, there's only the way through. Sometimes there is no good answer, there isn't even an answer, only more questions. It's messy, it's shocking, it's hauntingly beautiful, and sometimes downright magical. It's life. And, to quote Mr. Mellencamp, "Life goes on, long after the thrill of living is gone."

Let's laugh and make the best of it.

Dedicated to Brandon Miller

Monday, February 20, 2012

Working towards wellness

I had my first physical therapy meeting today. I asked my doctor for this because I've been stuck at home pretty exclusively for the last 10 years. I'm not just a couch potato, I'm a couch potato plant. I've been sitting so long I've grown roots. My balance is terrible, and my endurance is shot compared to what I used to be able to do. So they're starting me on pool exercises, and we'll work our way up to more land-based exercises as my endurance increases. And there's one key thing I really like about this whole arrangement: safety.

There's the safety of the warm-pool exercises. Access to this will allow me to work out and not have to deal with the consequences of gravity as much. The resistance of the water will help with building strength. The warmth of the water should reduce my pain flares, and give me greater endurance so I can work out longer.

There's the safety of using a trained medical professional for my rehab. I want to be able to push my limits like any exercise program. The only way I'll ever be able to do more is if I train myself to do more. But testing my limits can be pretty dangerous. I had one adrenal collapse while hiking in the mountains. Not a fun time. I can go too far if I'm not careful. And when I do, the results are catastrophic. So having a health professional guiding me is a huge relief. It means that if I do suddenly collapse, they'll be there and know just what to do. They won't panic. They're professionals.

Additionally, working with a physical therapist means that I know I'll be training my body correctly. Even in the intake exam, where they tested my muscle strength, the therapist had to correct my posture. While lying down, even! Apparently I've gotten into a bad habit of using my pelvis to life my legs instead of using my legs to lift my legs. It's easier that way because my muscles aren't as strong in my legs. But, as I said, it's a bad habit. Using my body like that will give me more back trouble down the road. It was something I started because of my pain, but now that training is working against me. This is a chance to train, doing things right, so I'm not injuring myself later.

It's exciting to be doing so real, tangible work towards my health goals. Going to doctors and taking my medication is responsible, and I'm all for it. But it doesn't seem quite as substantial as actually doing something physically. Exercise feels like work. Work feels like progress. I can already feel my self esteem rising. I'll be able to say, "I've got to go work out," and "oh, that's my day for the gym" like normal, healthy people. I won't be a couch potato plant, rooted to my spot, anymore. It will be glorious.

Among my goals are being able to work in the kitchen to cook a whole meal on a daily basis. That may not sound like much, but it's something I haven't been able to do for a decade. Only this past year did I get up to the point of being able to cook from start to finish. I was so excited, I was posting my finished meals on Facebook for weeks. I cooked an extra portion for my roommate, just because I could. But it's not a regular event. Most of my meals are still microwave. I think when I'm able to cook a Thanksgiving dinner again, I might just frame a photo of it and hang it on my wall.

The Great Potato Soup Experiment of 2011


I will get there. We begin tomorrow!

P.S. I am still taking donations for my trip to Seattle for the cure for my Autoimmune Hypophysitis (the nasty pituitary disease). I am at 10% awesome. Thank you!

Thursday, February 16, 2012

Donate for my trip to Seattle

As you may recall, my old endocrinologist has been promoted to head of neuroendocrinology in Seattle. She was the one who saw my disease go into remission and then reappear. There would be no need for me to prove anything to her; she was there. And now she's in a position where she could possible get me the cure for my autoimmune hypophysitis. The only thing standing in my way right now is affording the plane ticket. I was going to rely on my family for this, but the funds just aren't there. So I'm hoping, in a fishes and loaves sort of way, that if I get a little bit from everyone, it won't put anyone in too much of a hardship to help.

I'm trying to raise $449 for the plane ticket and rental car. I have friends I can room with, but transportation is not guaranteed. Many of the folks I know rely on public transport, and I am not healthy enough to do that myself, sadly. I can take care of food as I would have needed to eat that week anyway! ;)

I'm only asking for what I need. I will update the amount I necessary for the trip as donations roll in. When I hit my target goal (100% Awesome), I will remove my donate button.

[March 3, 2012]

This is a huge chance to change my life. This is the disease that has the potential to kill me. And I would be paving the way for my unicorn-sister and her treatment as well. Any amount is welcomed. Thank you so much!!!

[Edited to add]
My appointment is April 6th. I'm flying out April 4th and returning April 11th for the cheapest flights.

Prices have changed for the better!! My roommate was able to find me a better deal online for car & airfare, so now I'm only looking for $449!

Friday, February 3, 2012

Management of symptoms = Quantity of life

Have you ever tried to stop yourself from coughing? It's really difficult. As a symptom, a cough is very urgent, very demanding, very insistent. You're going to cough eventually. It's just a matter of when. Try not to cough for too long and the gag reflex will kick in. Then it's vomiting and coughing. The body will have it's way. Why do I bring this up? Because I want to remind the people who don't have a chronic illness that you *do* know a taste of what it's like to walk in our shoes.

Imagine those symptoms dragging on... and on... and on... Like that lingering cough after a chest cold that just won't go away. Only instead of just the cough, it's the whole cold dragging on. No amount of willpower will make the symptoms go away. Try to force them back and they push back even harder than before. Get burned often enough and eventually, you learn. Something are just-out-of-bounds now. Oh you may be able to indulge every once in a little while, push past the safety zone a bit. But the costs are high, and that's a reminder that your limits are still there. You count your lucky stars for the things that you still can do.

In a situation like that, it's natural to get frustrated. It's natural to become impatient. It's natural to be fed up. It's natural to want to turn our face to the sky and ask, "Why me?!" It's natural to be frightened of what the future holds. I don't have a feeling of safety in my own body. There's always the thought that things are going to change, and not for better. It's happened before, it can happen again. Flares erupt. Bad days are bed days. It's natural to feel at the mercy of invisible, mysterious forces.

It's natural to not want to be alone. I don't trust my body to function. I don't trust my ability to take care of myself. Why? Because I have had things happen to me that were bad enough that I vowed, "Never again." I've been too close to the edge---where if I hadn't've been lucky, I could easily have been dead. It's just safer having someone else around in case of emergencies. In those times another person is a lifeline. In quiet times, at the very least they brings peace of mind.

But what I dream of, when I dare to dream, is a world in which I can manage my symptoms in private and just get on with my life. After that, all other things would be possible: a self-supporting income, expressing myself artistically, participating in life again. A world where I can take care of myself and regain my adult dignity. A world in which I can build towards my future. A world where I can contribute more than just words to my brothers and sisters out there. They're good words, but I know I'm capable of more. This isn't just a world where I have a better quality of life. I'm talking about a world where I have more hours of the day where I am useful---a greater quantity of life.