No More “SUFFERING IN PAIN” for YOU!
Posted by Xine in The Chronic Mind, The Chronic in Public on January 27th, 2010
Whether they are spoken, read, or heard, words have the power to evoke certain thoughts and emotions for the speaker, reader or listener. The truth of this is evidenced in all advertising, politics, poetry, literature and in every day interactions. Look well and listen closely for even just a day, and see for yourself how the world uses (and abuses) words to make us want to buy one product over another, join a political movement, or how the words of a poet or a writer can transport us, emotionally, to wherever they wants us to go.
Those of us with permanent injuries or illness are repeatedly exposed to, and labeled by, a certain set of words, words used primarily by our Doctors, Insurance Companies, and Lawyers, that have negative connotations and by their nature illicit negative feelings within us. We even use these same words to describe ourselves and our conditions because we believe that these words will convey to others the severity of our physical struggle.
”Pain” is the body’s great messenger, and for most of us, it does its job well. Intense pain will drive you to seek the help that can save your life, and pain lets you know when you’re not done healing and that your body needs more time to recover. In the best case scenario, you do heal and recover fully from the injury or illness within the “normal” amount of time and there is nothing more your body needs to report, so the pain messages go away. But sometimes the injury or illness is such that complete healing takes much longer than “normal”, or in some cases, never happens. Your body didn’t get the memo from the AMA about how long it had to recover from whatever injury or illness it endured and all it knows is that things aren’t right and the brain needs to hear about it, often and loudly. They call us the “Chronic Pain Sufferers”.
- “Chronic” (Adjective)…Long-Lasting and Always Present.
- “Pain” (Noun) is defined as an Unpleasant Physical Sensation… Feeling of discomfort. Emotional distress. Something troublesome.
- “Suffer” …Feel pain. Undergo something unpleasant. Have illness. Have a weakness. Appear to be less good. Be adversely affected. Allow something.
- ”Sufferer” (Noun)….YOU?!
Put those three words together, as in “Chronic Pain Sufferer”, and you get… “Long-Lasting Unpleasantness for You”.
WOW…No thanks. Don’t want it. Don’t need it. I will not have it!
Isn’t it enough to feel, intensely, the physical sensations that are “always present”? Why “allow” (suffer) the “unpleasantness” (pain) as well. You might not have the power to change the physical sensations in your body, but you can change the perception of the experience in your mind by using different words to describe them.
I choose to call myself a Chronic. I like the idea that I am “long-lasting” and “always present”. Those are the messages/words I want repeated throughout the days, and weeks, and years of my life. I want to be thought of and remembered as “long-lasting and always present”. Other meanings and extended meanings of Chronic also work for me as a source of strength. I can identify easily with the ideas of “repeatedly doing”, “constant”, “persistent”, “unremitting”, “ever-present”, “inveterate”, “incorrigible”, “seasoned”, “hardened”. Somehow all those words just make me feel vital and alive and full of mischief. If I have to listen to non-stop messages from my body, then I choose the message of Chronic!
If you’re a Chronic like me, then these physical sensations have been going on for some time now; 24/7 for five, ten, twenty years or more. Maybe so long that you’ve forgotten what it felt like to be without them. Would you really choose to associate the word “unpleasant” with that much of your day, your year, and ultimately, your life? Finding benign words to communicate the intensity of the experience to others (* when necessary), will reduce the repetition and reinforcement of “unpleasantness” and “suffering” in your life experience. Teach those closest to you to use these benign words when they talk to you, or ask you how you’re doing. When someone close to you notices that your function level is down, or maybe they can just see the effort on your face, instead of saying “Are you in pain?”, “Wow, it looks like you’re really suffering today!”, they would say “It looks like you’re really feeling it today!” and you say “Yep, really feeling it”, or “Strong sensations, huh?” and you say “Yep, strong ones”. It might not seem, at first, like these subtle changes could make a difference, but trust me, they do, not just for you, but for those nearest and dearest to you as well. In this way, you can connect with others and communicate the relevant information about your body and its level of function without bringing any “unpleasantness” or “suffering” into the moment.
Questions for the Chronic or Xiney…un-capped
Posted by Xine in The Chronic Mind on January 22nd, 2010
This questionnaire was designed by Aggie Villanueva for a project she’s working on. Answering these questions was challenging but I feel like it was worth the effort. At the very least I came up with a few good “sound bites”, and at best…well, I didn’t work on it for very long so I don’t have any expectations for a “best”. I took a look at Aggie’s photographs and they are wonderful. I wish her equal success in this project.
I thought you might like to read my answers and maybe have a go at answering the questions for yourself and see what you learn!
Interview Questions for Chronically Ill/Handicapped Artists
Name: Christine
email address: Chroniclife.org
List of all Your Sites: Chroniclife.org
DAILY LIVING
Please describe in detail what are your illness(es) or handicap(s). It/they may be physical, emotional/mental. Take as much room/time as you need. We all suffer different symptoms and I think readers would want to understand exactly what yours are, and how they affect living a “normal” life. Be very detailed, please, even if it is medical sounding.
My physical irregularities involve 4 disc levels in the lumbar (L 2-3, to S 1)that are no longer “disc-like” in structure and occaisionally bits break off and impinge nerves , and also, since 2005, a combination of soft tissue and alignment problems in the cervical made more fragile because of a fusion surgery at C 4-5. A recent lumbar MRI showed heavy osteoarthritis in that area. As for emotional/mental handicaps, well, there are those that would argue, but I say “None”.
Of course there are prescriptionmedications in our lives, but do you take any of the narcotics/mood elevators so frequently prescribed by doctors? Specify the meds, please, and their purpose.
Narcotics are like Credit Cards; you should never try to buy anything you can’t afford to pay cash for, unless you’re willing to pay the high interest. I take Hydrocodone, generally in 10mg installments. There are times when 5mg will do, and others that require 15mg. My personal limit is 60mg per day. If I’m exceeding that dosage it’s time to make some dramatic changes in activities. On an average, Medium Function day, 40mg of Hydrocodone is enough to give me some psychic distance from the sensations and allow me to get some activities done (i.e. housework, laundry, or maybe a car trip to town).
Exactly what are the changes in your life brought on by your chronic illness/handicap?
I’ve learned patience, and some great breathing techniques. I’m still learning to be more organized than I ever was because everything just takes so much longer. If you want to get something done on a deadline, like say Christmas! you better start working on it in October. I’ve learned how to ask others for help (not gracefully but I do it anyway) and I have to get better at giving verbal instruction regarding my art. That’s the change I’m working on right now…is how to get the ideas and projects out of my head and into the world, with or without Function. I’ve learned that I am lovable and a valuable part of my family for reasons other than my physical contribution. I’ve gone through pain to the other side and its love…
Do you let others in your field, or in your life, know about your handicaps? Why or why not?
Rarely. Why? Because it’s irrelevant and I think “pain speak” is boring and bad for you as well. People have asked me “What’s wrong with you?” and I usually answer “It depends on who you ask”. I especially don’t like to hear people trying to one-up each other in the ailments department…that just seems so counterintuitive to me. I have a few Chronic friends and we tell each other success stories, philosophic revelations, analogies, and great handicap jokes but we never talk about “how bad it sucks”…what good in that? I also have a special agreement and language with my close family and friends; no sad faces, and no using words like “pain” or “suffering”. Being aware of the messages that you’re exposed to or that you yourself think or say is really important. I stay away from “pain pirates” and those people who tend to focus more on detailing and describing the obstacles rather than on walking the path.
How do you cope each day? Please address every level, such as emotional, physical, etc.?
One of the words used in the definition of “cope” is “suffer”, and I just don’t like to use the word “suffer”. So, I don’t cope…I live, as soulfully and as deeply as I can. The idea of coping or suffering is only meaningful if you’re holding onto a different idea of yourself than what you are right now, or by comparing yourself to others and the speed and ease at which they are able to move through the day. If I were to try to hold on to the idea of the physical person I was, even as recent as 5 months ago, the difference would be too great a chasm for my mind to span and I would fall into a very deep, dark place. My husband and daughter live very active lives and I’ve been pretty much couch-bound for 5 months now, so you can see how much potential there is for suffering were I to allow myself to contemplate the differences. I choose to bring myself totally into the present and just do today’s work today. And my “today’s work” is determined and structured around today’s Function Level. If I have certain physical limitations then I adjust my work accordingly, put it off, or get some help. Sure, sometimes I don’t get a shower for days at a time and there have been months where shaving my legs wasn’t gonna happen, but I focus on taking care of the essentials, and those essentials, for me, are A) doing the pool workout that keeps me fit. B) finding gifts to give to my husband and daughter everyday (and that could be anything from a good belly-laugh, to taking care of their clothes, or making a dinner, or helping them fix a problem). C) Nurturing my creative impulses and making art of some kind, either with my hands or in my head. Addressing those three areas, the physical, the emotional, and the creative, are the essentials for maintaining the high quality of life that I need. There’s a lot of juggling that goes on from day to day between those three areas but finding new ways to go about getting them all, makes everyday an exciting challenge rather than an exercise in coping.
Do you see a therapist? Why? Please describe how/why this helps you? And what are the drawbacks, if any, of seeing a therapist?
I saw a psychologist in 2007 for 3 months because I needed to get some new cognitive tricks up my sleeves and she did a good job. I read all of the books she suggested and we talked about my adjustment issues and she got me back on the path. I don’t see any drawbacks in talking with someone about how to make big changes because a good therapist can give you insight into making those changes more quickly and gracefully.
How long did it take to find out what was wrong with you, and what did you suffer during that time? How did that experience affect you at the time? And now, looking back?
It took me about 30 seconds to realize that something was wrong, both times. In 1986, when I was 26, I didn’t realize that the wrongness would be permanent, so there was considerable suffering, initially. Once I accepted the reality of the situation, maybe a year or so after the incident, I just got on with my life with the body that I had and went about the work of figuring out how to make my life what I wanted it to be. The neck injury in 2005 (I was 43) had a similar arc; There’s the hope that it’s not permanent, the denial that it is, and then the acceptance.
What would you say to those who are now enduring the frustrations of losing life as they knew it, and not knowing why?
I’d say “this too shall pass”, so let it pass. Rather than spending the time and mental energy being frustrated at the loss, spend that time and energy engineering your present. You have so much good work ahead of you, and the sooner you can jump into the challenge of getting your “essentials”, whatever they are, the sooner you’ll stop suffering and being frustrated. I’m not suggesting that anything’s going to change for you except the way that you view it; and that’s the most important change to work towards. As for understanding the “why” of it, that comes in time. When you’ve truly accepted what you are now, you will be at peace.
When you first experienced your symptoms, what was the reaction of friends/family/co-workers, etc.? And how did they make you feel?
Horror, panic, disbelief…same as me, but over the years I’ve encouraged those close to me to relate to me from a place of acceptance and gratitude for whatever Function I am blessed with at any particular time. Some people just can’t handle the information and I have to stay away from those folks for my own reasons, but that’s one of the reasons I don’t talk about “what’s wrong with me”, I don’t trust people to deal with that kind of news in a way that works for me.
I’ve read that the divorce rate for the chronically ill/handicapped is over 75%. http://www.associatedcontent.com/article/2333450/divorce_rate_among_the_chronically.html What problems has your illness/handicap caused between you and your mate? And how have you handled it?
I’m actually surprised that it’s not higher. Most marriages don’t work out for long anyway, but throwing a big fat chronic illness/injury into the mix could cause whatever faults the marriage already had to become deal breakers. It’s a real test, for both partners, especially if the chronic can’t get to that place of acceptance. To see yourself as broken and useless is not a good place be. How can you possibly love someone and believe that they love you, if you don’t love you? I’ve been there a few times, unable to feel worthy of love, but I am blessed with a husband who knows how to show me what I do for him; that I am worthy of his love simply because I make him feel loved.
Money has been a problem since 2005. I still haven’t figured it out but I’m working really hard at finding a way to turn the ideas in my head into a marketable product or business. The difficulties that my unpredictable Function Level generates have been the biggest obstacle, and trying to visualize a career that allows me the kind of freedom and flexibility I need in regard to my physical self is no small feat. I feel like I’m getting closer to a solution and I work on it everyday, whether it be notes in my journal, computer research, or a business plan.
Between you and your children? And how have you handled it?
The doctors told me I wouldn’t be able to carry a baby to full term. They were wrong. I gave birth to my daughter 5 years after my lower back injury and went on to be a single-mom, head of household for 10 years. My daughter has seen chronicity from her infancy and, judging by her successes, she has learned one very important lesson; that if you want something in your life, you need to figure out a way to make it happen, no matter what. I’ve always been completely honest with my daughter about everything, and she with me. I don’t pretend to be stronger or braver than I am. She sees me scared and doing it anyway. I’ve also taken every possible opportunity to look at her with all of the love and pride I feel for her right there on my face. Sometimes it’s difficult to lead by example when you’re in a prone position, but it’s not impossible. At those times I simply shared with her my concern that I might be having a negative effect on her and her activities. I told her it was great for her to go out and have exciting times without me, and that nothing would make me happier than to see her taking the world by storm. Sometimes our loved ones don’t want to leave us behind, but if I can’t go with them, then I push them out the door. I say,”I need to surf vicariously and you’re the only ones who can do it, so go! Surf for me!” I never wanted my daughter or my husband to feel guilty about being able, but that’s one of the side-effects of being a sufferer; the people who love you will suffer with you…so that you’re not alone. How can they be happy when you’re so unhappy? The Chronic also has to overcome the occasional jealous moments when everybody else gets to charge into life without them, and learn to find the joy in watching others live out their dreams. Accomplishing this took a conscious effort on my part, to begin with, but now it’s just the way I feel.
Obviously, disabilities may hamper your sex life. What problems has this created between you and your partner, and how have you handled it? As, with all questions, you may be as open or as private as you want about the questions, or choose to ask for anonymity.
Really? Hmmm. Ours just got weirder! And that’s the trick of it, isn’t it; rolling with the changes and figuring it out as you go along. I think some people must have a very narrow concept of “sex life” because I can have a great one all by myself. My husband and I don’t even need to touch each other to arouse each other…or even to speak. As far as the logistics are concerned I am in charge of positions and equipment (i.e. extra pillows, foot supports, etc.), because I know what my Function Level is and I know, sort of, what I’ll be able to do. My only other obligations are to be naked and enjoy myself. Sometimes I have sex just for my husband’s pleasure, usually because the sensations are too strong for me to be able to ignore…even for an orgasm. But his pleasure is a kind of mental orgasm for me, so, even though it can be uncomfortable for a few minutes, the payoff is worth it, for me and my husband. Your “sex life” doesn’t begin and end in the bedroom. By talking sexy to your partner, crafting romantic moments, kissing and touching each other in a very loving way, you will be living your sex life all the time.
If you suffer from Insomnia, do you deem that good or bad? Does it help your creativity or hinder it? How does it affect you physically?
No insomnia…sleep like a rock.
Describe something specific to your own living circumstances that present challenges beyond your capabilities. For instance, where I live my pipes freeze every winter for weeks. I usually get back my water in the kitchen sink before anywhere else. I can spit bathe without much pain. But if I bend over the sink to wash my hair, the pain to the degenerative (inoperable so far) arthritis in my back discs can put me in bed for days. Or, the short trip back and forth to my frost free to bring in daily water inflames my bursitis in both hips and the pain causes me to need a cane for a few days.
These types of examples will help people understand what your life is like far better than just saying “I suffer contestant pain.” Give as many examples as you can think of, please.
As you probably were able to guess by now, the idea of uttering a sentence like “I suffer constant pain”, for me, is impossible. As a rule, I “suffer” as little as possible. I do have chronic intense sensations that alter the way I move through the world, but I view it as more of a mechanical problem than an emotional one. I detach my emotional self from my physical self so that the one doesn’t dominate the other.
As far as “challenges beyond my capabilities”, I don’t know what that means exactly, so I’ll just describe my dance. I pay attention to what my body is asking for; sometimes that means movement and sometimes it means being still, and sometimes that means reminding myself to pay attention to my body. Every morning I do a body scan, I lay in bed and move and stretch and flex my limbs, basically a “systems-check” before lift-off. I never liked that “Pain Face Scale” that doctors use, so I made up my own rating system. I call it the “Function Scale” and it goes from 1 to 10 with 1 being –still breathing- and 10 is –I can do whatever I want-. You would have your own 1 to 10 imagery. What I use this scale for is to adjust my activities and goals to the current function level. This system works really well for me because it means that I can still have achievements and meet goals every single day, and isn’t that all we have anyway? Specific example…A High Function day would mean that I could perform a wide range of movements, sustain them and take fewer narcotics. December 10, 2009 was a High Function Day, maybe a “9”, which is why I remember the date. I was doing a little dance as I came from the bedroom, laughing and crying at the same time for the same reason: Joy. For the first time in 4 months, I could move freely. I had 8 good days. I wanted to do everything, all at once, and my brain just exploded. Having a wide range of expectations for the different Function Levels I experience helps me to not get into that “useless/hopeless” frame of mind. Sometimes my activities and goals are simply to try to find a position that doesn’t hurt and to breathe, calm my mind and lower my blood-pressure. I’ve noticed that pain causes my pulse to race and my blood-pressure to jack up to unsafe levels and I think that’s probably a good thing to avoid exposing myself to on a regular basis, so when the sensations are that strong I just try to find a quite place and stay there until I have to pee. But when my mind goes to ideas and projects that are High Function it’s important for me to have some place to put those thoughts and let them marinate so I have my mental file cabinet filled with activities for all levels of Function, Low to High. I don’t want to deny a High Function idea/project just because I’m currently Low Function, that would cause “suffering”, so having a place to put those ideas allows my mind the freedom to work out the “how” of making them happen…with or without High Function.
Do you have hope that you will recover, at least partially? Do you think this hope is helpful to you or detrimental?
Recover? To restore oneself to a normal state? This is my normal state, for now, and if I work really hard maybe it won’t get worse too quickly. I am extremely grateful for High Function days and I take full advantage of those, but “hoping” for the return of something lost, not so much. Shit, I don’t know if I’ll have the function of last year let alone any of the 20 years before that. The kinds of things I hope for are finding new pleasures and passions, discovering a way to fulfill dreams, the unexpected miracle…my hopes are all for the future and have nothing to do with the past.
What sites/organizations are the most help to you? Please list detailed contact information.
Books have been the most useful tool for me. I will list my favorites and then you can figure out for yourself why they were so helpful…if you want to.
Illusions Richard Bach
Jitterbug Perfume Tom Robbins
Poetics of Fire Gaston Bachelard
A New Earth Eckhart Tolle
Alchemist Paulo Coelho
Monsoon Wilbur Smith
Birds of Prey Wilbur Smith
Blue Horizon Wilbur Smith
DAILY LIVING AND YOUR ARTISTIC WORK
List all your blogs, sites, etc.
Chroniclife.org a work in progress.
Please list your artistic accomplishments or attach your resume. i.e. the names of your book(s), and are they self-published or list the traditional publishers; list your exhibits, gallery representation, etc. If you don’t have a resume, list everything you’ve done in your field.
Currently I am using beach glass, sea shells, and wire as my materials and I craft them into unexpected forms. I like the idea of using something that at one time had such a specific man-made functional destiny, like a bottle. Then it was discarded, broken and apparently useless, maybe even “bad”. But time and God hone these broken, useless, discarded fragments into little gems. Life as a bottle is nothing compared to Life as Art. I see myself as beach glass, all smooth, edgeless, rare, glowing and living life as art is my purpose.
I have about 8 really large pieces of acrylic abstract painting that are destined for a show one day. And I also paint figures and landscapes when I feel like it.
I love designing themes and decorating events. Before the neck injury I did huge black-tie fundraisers for my daughter’s private school for 6 years in a row. The flower arranging was especially pleasing. In the 5 years since the injury I have only done 2 small events in our yard, my daughter’s 16thbirthday and her High School Graduation party…both of which were epic but took me weeks to set up. I imagine my future work in this area to be more conceptual and less labor intensive.
If you have a media page, List the link(s) to your media page, which includes links to all your reviews, interviews, promotional materials, resume, etc.
I’m working on getting photographs of my work posted somewhere but it’s a slow process.
Describe exactly what you do in your artistic field — everything, including teaching, speaking, etc.
I make art.
If you haven’t yet begun to pursue your artistic talents, what is stopping you? i.e. fears, depression, physically unable?
n/a
What keeps you going strong?
Believing that everything is exactly as it’s supposed to be.
What makes you weaken, physically or emotionally?
Fear and doubt.
Describe the particular challenges your illness(es)/handicap(s) cause you to face, specifically in your artistic field, and how you overcome them.
Sustained physical activity is always a problem whether it be making canvases or just holding a brush up, so I’ve put aside the big painting for a while and turned my attention to smaller, lighter materials that I can work with in a comfortable position.
What do you do differently additionally than an artist living a “normal” life? Describe what, in your artistic working day, is different and/or additional to a healthy artist’s day?
I have no idea. Sorry. I don’t know any “normal” artists, they all have one handicap or another.
Did your handicap influence the path you took in your artistic field? Did you have to change anything to accommodate your capabilities? Please be specific
It is said that when a door closes, a window opens. When physical doors close for me, I simply fly out the window, I don’t stand around pounding, screaming and crying to get out the door. So to answer your question, yes, my physical Function Levels do influence my artistic path, but always in a good and exciting way. I may never have tapped into this new art form had the door not closed on the old one. I don’t imagine that the butterfly longs for its life as a caterpillar.
Were you already an artist when you became ill/handicapped? If not, how/why did you get started in your artistic field?
Yes, I have always been artistic but at the time of my first injury I was way more into my body and athleticism. I returned to art with the encouragement of my husband. He wanted me to paint for him and he made me a studio out of our garage and all the materials I needed. His enthusiasm for my work has grown and changed as I do. He recently bought me a full-sized drill press for my beach glass that sits in the middle of our living room next to the sofa I spend most of my days on. He is my love and my muse.
As this book project proceeds may I contact you again with further, or more specific, questions?
Sure. Many of my answers are on the short side and I’m sorry about that. I can’t work on a project for very long because I need to move from one thing to another as my Function Levels allow and unfortunately that, combined with a short attention span, makes me the queen of procrastination. I might be able to elaborate on a fewer number of questions if you want, but if I were to answer each of these as they deserve to be answered…I’d be writing the book!
In Your Own Words
Please take some time now to just tell your story in your own words. Don’t worry about answering my questions. Begin where you feel it all started and take me through to the present. No word limit.
My journey began where all our journeys begin, at birth. We all face obstacles, some from within, and some from without. How we learn to deal with the movement of life, the choices we make, the teachers we choose, the perspective we maintain, are all factors in why we become who we are. I’ve walked through fire, metaphorically speaking, long before any physical challenges presented themselves, and come out of those situations transformed…like a phoenix from the ashes. I have been shown in my own life, and the lives of others, over and over again, that if you just keep walking you will emerge on the other side, transformed. Will you be the same person you were before? Hell no. You will be changed, inside and out. My favorite quote on this topic is from the book “Illusions” by Richard Bach, which I first read when I was 12 years old. I didn’t fully understand the message but I kept it close to me for 35 years and I am beginning to truly understand…”The mark of your ignorance is the depth of your belief in injustice and tragedy. What the caterpillar calls the end of the world, the master calls a butterfly.”
Selah
2010 Resolution
Posted by Xine in The Chronic Body, The Chronic Mind on January 4th, 2010
I don’t have a conversion chart handy so I’m just guessing when I say that 4 months of “couch days” equals 2 years of regular days but that’s exactly what it feels like. Everything slows down and every activity or project takes much longer to accomplish than it did before. Having some down-time is one of the realities of being a Chronic, there are going to be the occasional “couch days”. But when the few days of down-time becomes 4 months of down-time, the FEAR sets in and you wonder “what if this is the new NORMAL?”
This is where I am right now, on the couch and wondering if this level of physical activity, or to be more precise, physical inactivity, is my new normal; days spent primarily on a couch with the long hours being punctuated by quick trips to the bathroom or kitchen that sometimes result in flares strong enough to bring me to tears. In such a state, 4 months can feel like forever and it’s not difficult, with all that time on your hands, to begin to entertain the dreaded possibility of “what if things don’t get better?” So rather than push those thoughts out of sight, I decided to entertain them fully…catering, decorations, open bar, and music…and the theme of this event was “How do I get what I need out of life with the body I have today?”
I started by assuming, without any emotional attachment or suffering, that the way I am right now is the way it’s going to be from now on, and began thinking, within that framework, about how I could design a fulfilling life for myself with the current physical limitations. It’s a very rewarding exercise (irregardless of the eventual outcome), and what you learn about yourself is amazing. You’ll find out what’s really important to you, and you’ll figure out new ways to go about getting those things/experiences as you are right now. Treating this challenge like a game, or a puzzle, is infinitely more positive than bemoaning the loss of function. Nothing makes you more depressed than remembering how easy these things used to be for you and wishing that life weren’t so unfair, so why even go there?
When you have less Physical Currency available to “purchase” activities or experiences, it’s important to spend wisely. I use the money analogy often because I think it illustrates well the phenomenon of physical limitation; The more money you have means the more things you can have and do, and likewise the more physical abilities you have means the more things you can have and do. But not having money, or physical ability, doesn’t mean that you can’t get what you need and want, it just means that you’ll need to be more selective.
Moving my body, whether through dance, or sport, has always been of great life-value and brought me joy, so finding a way to get that kind of movement into my life at a time when it’s difficult to walk 20 feet is a puzzle worth solving. My answer has been The Pool. I don’t have a pool at my home but membership at the YWCA gives me access, even if I have to hustle a ride to get there. When I’m in the water and all stretched out, I take the opportunity to move my body like I used to on land…I dance, I rollerblade, and I run like a champion sprinter all in slow underwater motion. That’s the beautiful thing about water, very little gravity, and if you use a waist flotation device, you don’t even have to exert yourself to stay afloat. Don’t be shy or embarrassed about using a floatation device, I’ve been a very strong swimmer all my life and I use one for the first half of my workout because it gives me more control over which limbs I work and to what degree. The floatation belt also allows for a very gentle traction and sometimes I start the session by just allowing the weight of my legs to stretch out my lower-back. The more time spent in the water the better I feel. Sometimes I fantasize about a home/work situation that would allow me to live in 4 feet of water…hmmm, mermaid?
Another really important element in life, for me, is the quality of my intimate relationships. These bring me the most joy and I work at crafting memories with my loved ones. When you have two very active and hard-working people in your life it’s impossible to keep up with them as they fly from one activity to the next, but it is possible to pick and choose those activities that you’re willing to “pay for”, so to speak. For example, although I was only able to celebrate New Years Eve from 6 to 8 p.m., I realized that the moon would be rising off the ocean at 7:30 the next night. So we brought our food and champagne down to the beach for dinner and had a toast to the first moon of 2010. We sang every “moon song” we could think of and the others went for a swim in the moonlit ocean. Yes, I was uncomfortable, sometimes very much so, but the memory of that time with my family was well worth the price. I can’t do as many things as I’d like to with friends and extended family, but I try to make the most out of the one’s I have.
I guess that’s my point really, making the most of what you have while you have it ‘cause, seriously, it might not be there tomorrow! The doctors aren’t optimistic but when are they ever? For me the best plan is to learn as much as I can about my anatomy and physiology, continue doing whatever physical rehab feels right, and reprioritizing my daily activities so that I keep getting the ESSENTIALS of what I call an amazing life.
Your Body is Not the Enemy
Posted by Xine in The Chronic Body on July 9th, 2009
When you’re being bombarded with intense physical sensations that a.) Hurt b.) Prevent you from moving normally, or c.) Stop you from doing the things you want to do, it’s pretty easy to view your body (the source of these uncomfortable sensations and limitations) as an enemy intent on destroying your day and ruining your life. If these physical sensations were actually coming from an outside source you would definitely call it an enemy and you’d want to make them stop what they were doing by any means possible.
I can remember a time when I felt this way about my body, and the voice in my head (as well as the words I used with others) reflected this negative relationship with my body. I would get a nerve flash or muscle spasm and think “Ow! Stop it, you evil bastard!”, or I could be heard saying things like “my back is really kicking my ass today”, or “I’m being hi-jacked by a back-attack”. I haven’t examined my old attitude too closely, but I’m thinking that it was easier to believe that an enemy (rather than my own body) was being so disruptive and destructive, and by making my injured back into this enemy, I would be giving myself something to fight against and forcing myself to fight back. It seems ridiculously obvious to me now, but being in a battle with yourself is really quite draining; no matter what the outcome is, you’re still gonna lose. Fortunately, I was gifted with a wise teacher who showed me the only way to win.
My relationship with my body changed one day, abruptly and completely, by the wise words of a masseuse I was seeing at the time. I was on his table getting ready for the massage and I casually said something about how my back was totally messing with me and how evil it was to be hurting me so badly. He corrected me fiercely, saying that my back was, in fact, one of the bravest and most courageous backs he had ever seen…that in spite of so much damage, and against all medical odds, this incredibly amazing back continued to keep me upright and walking almost everyday. He told me that I shouldn’t be cursing my back for its failure to perform the way it used to, but that I should be thanking it, profusely, every single day, for the excellent job it was doing under such difficult conditions. The sensations that I felt, he said, were merely indications that my back needed help and rest, and that I should listen to, and address those needs quickly and with gratitude for a job well done.
This revelation has made a huge difference in my life and my day to day experience with my body. From that day forward I could no longer see my back, or my body, as the enemy I once believed it to be; it was now a strong and courageous friend that worked very hard to do the things I asked it to do. The physical sensations that I had once thought of as malicious attempts to ruin my day, became cries for help from a brave wounded friend. This shift in perspective has created a much more positive and healthy relationship between my mind and my body; they are no longer engaged in adversarial and insulting communication but now speak with mutual respect and encouragement. It’s kind of like having the members of your household go from a yelling, degrading, and caustic relationship to one that is kind, caring, considerate, and supportive. It’s not hard to imagine the relief of going from one to the other, and it’s the same relief that you’ll feel when you make the shift from foe to friend in your relationship with your body. You’re all on the same team now; working and communicating in a wholesome and positive way…things are now going to work out better, faster, and with a lot more joy and gratitude.
Examine your own relationship with your body. Listen to how and what the voice in your head says about the physical sensations of the body (it would be wise to pay attention to what comes out of your mouth as well). Do you see (and talk about) your body as the devoted, courageous, and supportive friend that it is, or do you curse it as evil, malicious and vindictive?
Once you make the perspective shift and embrace your body as a friend rather than a foe, the physical sensations will still be there, they’ll still hurt, they’ll still change the way you move and limit your activities, but these sensations, these bodily messages will now be mentally answered with an “Okay, I hear you, I’m sorry this is hard for you but I appreciate whatever you can give me right now and I promise I’ll stop asking you to work as soon as I can…hang tough, we’re almost done. You’re doing great, thank you.” It’s important for you to keep your promises too. Give your body the rest, treatment, and attention it’s asking for and you will find that you have a body that is willing to make the extra effort for you when you ask for it because it knows that you’ll make the extra effort for it.
One of the unexpected and surprising side-effects of learning to be in a positive and healthy relationship with something that causes you physical discomfort is that it changes your attitude towards all uncomfortable relationships. You’ll find yourself not so quick to assume that just because a persons acting in a way that makes you uncomfortable that they’re an enemy you need to attack or defend yourself from. You begin to allow for the possibility that maybe they’re trying to function in spite of serious damage (emotional or otherwise), and that they’re doing the best they can…just like you. Being kind, caring and compassionate to your body, and ultimately to yourself, turns into kind, caring and compassionate behavior towards others. You’ll find yourself surrounded by friends rather than foes and that’s a good thing.
If you keep making that face it’ll stay that way!
Posted by Xine in If you keep making that face it'll stay that way!, The Chronic Body, The Chronic Mind on July 7th, 2009
There are many emotions and reactions that show expression on the face without conscious control; they’re automatic facial responses to emotional, and to a lesser degree, physical stimulus. It doesn’t seem to matter where you’re from or how you were raised, we humans share almost identical facial reactions to grief, anger, joy and pain; these unconscious facial responses are pretty much universal. We also have an innate ability to “read” these facial expressions in others, as well as listening to what they say to gather the whole message; if the words don’t match the facial expression we consciously or unconsciously notice the discrepancy and as a result we might doubt the person’s sincerity.
Happiness, Sadness, Anger, Fear, Disgust, Surprise, Contempt, and Shame are some the more recognized and researched facial expressions. The “elicitors”, or causes, of these facial expressions are emotional and occur as a result of the body’s response to an emotional event. Pleasure and pain are the only two expressions that I can think of whose origin is physical and not emotional; every other facial expression named above is in response to an emotional elicitor.
Although the facial expressions can be spontaneous and unconscious, they are not beyond our conscious control. This fact is evidenced by the cool, unreadable faces of the professional poker player, or the highly trained actor, or the successful con-artist or politician. The reading of subtle facial cues is also a skill that can, and is honed by law enforcement professionals, private investigators, fortune tellers, psychiatrists, and a whole host of individuals who make their livings off of being able to “read” the unconscious thoughts and reactions of their subjects/targets.
Repetition is the way in which we learn almost everything; the more often you do something, the easier that thing is to do. Our muscles, just like our minds, have “memory” and the more often thoughts or movements are practiced the stronger the memories become. For this post I would like to limit our conversation to the unconscious facial expression that is the reaction to the physical experience of pain. And furthermore, suggest that, with attention and practice, it is possible to become “conscious” of these facial responses to pain, learn to relax the automatic facial muscle contractions and train the muscles in the face to respond, initially with a neutral expression, and then ultimately an expression of peace and joy.
The photos at the top of this post, and particularly the first image on the left, show my spontaneous facial response to an intense physical message. The second photo shows a more nuetral expresssion, but there is still some residual tightness in the forehead muscles. The third photo shows conscious control over the facial expression and is the face I practice as often as possible…even when I’m alone. Unless you look into mirrors often, you may not even be aware of your own “pain face” until someone tells you about it. I was unaware of how much my face changed as a reaction to intense physical sensations until my husband brought it to my attention. He would say “Hey, it looks like you’re really having some strong sensations”. Surprised, I would ask “How did you know?”. “It shows on your face” was what he answered. I started paying attention to these unconscious facial responses to strong physical sensations and I realized that even when I thought I wasn’t showing it on my face, I actually was; there was a tightening of the muscles between my eye-brows that required my total concentration to get them to release their grip and relax. Even after all that concentration I was forced to have to check and re-check again and again to make sure the tightness didn’t sneak back onto my face.
If you’re living with a chronic illness or injury that involves physical sensations some, or all of the time, imagine how much of the time your face spends in this unattractive expression? Your muscles have a strong memory (which is why you never forget how to ride a bike) and if your face has been allowed to unconsciously assume this unflattering facial expression for the same amount of time that you’ve been experiencing the physical sensations that elicit them, well, that’s a whole lot of muscular “unlearning” to be done. It takes attention, focus, desire and practice, but it’s not impossible. You will teach yourself to become aware of your facial response to the physical sensations, take a few deep cleansing breaths to clear your mind and then ask your facial muscles to release, relax, and reflect a new emotion…one of gratitude. The physical sensations will not magically disappear, but your face will no longer be unconsciously in the service of these bodily sensations; you will have conscious control over the face you show the world.
Don’t be discouraged if it seems to take a long time to get control over these facial muscles. If you think about how long they have been unconsciously allowed to contract and contort themselves in response to years of physical stimuli then giving yourself more than a couple of months to unlearn it doesn’t seem so long. The big difference will be that you are no longer acting “unconsciously”, and once you put the high-beam of your attention to the unlearning of these automatic facial expressions you will be amazed at how quickly you can gain conscious control of your facial expressions during an episode of increased physical sensation. This exercise is well worth the effort, both for your enhanced appearance, and for the lives of those who look at you every day. I can’t imagine burdening my loved ones with a “pain face”, they love me and care deeply for my well-being, and seeing me with a “pain face” can’t help but affect them and create a change in their thinking.
Expect to be checking mirrors a lot in the coming months, at least until you learn what facial expression goes with which physical sensation. Eventually you won’t need the mirrors so much, you’ll be able to feel, not just the bodily elicitor, but the muscles in your face. Be conscious and pay attention! You’re on your way to a more beautiful expression of your Chroniclife.
Chronicity…Nature or Nurture?
Posted by Xine in Chronicity...Nature or Nurture?, The Chronic Mind, The Chronic in Public on June 24th, 2009
Peggy Chun's "Eye Heart You" (eye painting)
Chronicity…Nature or Nurture? This is a question that’s been circling in my mind for quite a while now and the more I think about it, the tighter the circles get. I think it may be one of those unanswerable “chicken v. egg” questions that only serve to produce more questions.
So this post is simply meant to get you circling with me. What are the defining characteristics of a chronic, and are these qualities that we are born with, or are they learned, or maybe a combination of the two? Hopefully I won’t be alone in this quest and you will also spend some time observing, reading, and looking for clues in your world that will help to guide us in this inquiry.
While visiting the gallery of the late Peggy Chun, I read a story that was posted next to a wall of small (3”x4”) abstract watercolor paintings. My attention went initially to the paintings; they were wonderfully expressive and the colors were enchanting. But as I read the posted story of their creations, I began to weep…it was humbling, deeply moving, and inspirational. This is what I read…
“I am a watercolor artist. I was diagnosed with Amyotrophic Lateral Sclerosis (ALS) in 2002. When the ALS caused me to lose the use of my dominant hand, I began painting with my left hand in 2003. When my hands could no longer hold a brush, I painted holding a brush in my teeth in 2004. When my mouth could no longer hold a brush, I painted digitally with a computer that I could control with my eye movement in 2005 and 2006. Now, due to my inability to blink, my eyes are too dry to paint with my computer. But my creativity knows no bounds.
One of the things I miss the most, is the touch and the experience of painting; the sensual nature of the paper and the paint. So, as the next phase in my artistic evolution, I have begun ‘nose painting’ with the help of painting assistant.
I work with an assistant who does all the preparation and is fully involved in the painting process. We begin by my choosing a palette for a particular concept. My assistant sets out the paint in order of the progression of color I think will work together, usually 5 complimentary colors. All of my nose paintings are done ‘wet into wet’.
Next we choose from an assortment of ‘nose strokes’ I have already described in detail and organized on a chart. This chart eliminates the tedious work of having to spell out directions each time on my communication spell board. To begin, my assistant paints the tip of my nose with the colors I¹ve chosen as the base colors. Next, she picks up the paper and moves it parallel to my nose using the stroke I’ve chosen. We continue to use the paints and the strokes in the order I have chosen. Each time I change colors, my assistant has to wipe the paint from my nose and dry it before applying the next color.
Inevitably, while painting I begin to see images emerging that cause me to change my original plan. This is challenging because we have to work fast to keep the paper from drying. I find this to be the most exciting part about painting abstractly. I name my pieces based on what I see and feel, but take great joy in hearing what others discover in my paintings. I hope you enjoy these original nose paintings. I have never felt more challenged as an artist and am pleased to share this part of my artistic journey with you.”
From the Honolulu Star Bulletin:
Chun, 61, was diagnosed in 2002 with ALS, the disease that claimed her grandfather, mother and twin sister. In a year, Kimi Chun says, her right hand was motionless; a year after that, her left hand was stilled. For another year she could paint with her teeth, then for one more year with a computer program that read her eye movements.
The original prognosis was that she could live up to three years with ALS, but she’s rounding on five now. “It’s so important for her health and her state of mind to still do something creative,” her daughter-in-law says. “Creating is living for her.”
When Mecum began working with Chun, “I thought I was going to meet a heartbroken artist who had just lost her painter’s hand.”
Instead she found someone overjoyed to find what she could do with her left.
…Chun prepared for each loss of function, for example, preparing a special brush she could hold with her teeth in anticipation of losing control of her left hand. When it became clear she’d have to go on a ventilator to aid her breathing and would no longer be able to speak, she set about numbering all her paints so she could select colors by number, Mecum says. “She was always thinking ahead: ‘How can I keep painting?’”
In fact, Mecum says, it’s hard to think of Chun in terms of loss. “Once you really know Peggy, it’s OK, everything that’s happened. She has a bigger life than those of us who walk around. We laugh that we have to keep up with Peggy. We feel like couch potatoes around Peggy. She teaches us to live in the second.”
Are you crying yet?
We lived down the road from Peggy Chun for about a year and one day my daughter was going door to door selling these whacky “Magic Pig Wands” that I make and sell when we need a little extra financial coverage. They are diet pigs (the hang-tag reads), if you wave them over food or dessert they remove all calories. Peggy Chun saw my daughter approaching her home with a wicker-basket full of brightly colored pig heads on sticks (she was in her bed near the window), and she called out, “Get that girl in here!” She bought all the pigs that Lindsey had and told her to keep bringing more! I made a special Pig for Peggy and went over to introduce myself to the woman who was crazy about my silly pigs and wasn’t too surprised to find a 6’ tall Merpig (mermaid pig) on her front porch. When I learned of her illness and saw the way in which she was dealing with the news that her body was deteriorating…to her death, I was overwhelmed, humbled and in complete awe of her Chronicity. Whatever “problems” I had in my life or my body, seemed petty and I was ashamed to have considered them “problems”. Peggy Chun was slowly dying of ALS and yet she had no “problems”, she was brimming full of life and so consumed by her enormously voracious creative spirit there was no way ALS was going to stop her.
Where does this overwhelming passion come from? Are we all capable of finding our own passions and investing, with Peggy Chun intensity, every second of our lives to our passions?
There are others in the world who also demonstrate the ideals of Chronicity, some with illness and injury, and others without. I challenge you to look around and find your owns examples of people living a chroniclife…what characteristics do they share, what are the common denominators, are they qualities that can be learned, practiced and taught?
I too will be doing research and making a study of these questions. I will share the results as they come and ask that you do the same. Maybe together we can tap into the source of power that Peggy Chun had in spades and make it a part of our own chroniclife.
“After all, you don’t paint with your hands,
you paint with your heart.”
~Peggy Chun
Electrical Storm
Posted by Xine in Electrical storm, The Chronic Body on June 21st, 2009
Reclined-typing is still a skill in progress for me so please forgive the irregularities and flubs, they should be viewed as indications of authenticity and organic errors arising out of the actual experience of typing in bed.
I awoke this morning with my heart full of hope, and my head full of ideas, but the first body-scan of the day suggested to me that all those ideas in my head might have to wait. As I’ve mentioned before, I’m blessed/cursed with an almost total physical amnesia; when I’m having a high-function day, it’s pretty much impossible for me to remember with any detail of what a low-function day felt like and vice versa. So I’m writing today because I want to communicate accurately the details of a low-function day and if I wait until later then I won’t be able to recollect the experience when things change.
My body’s specific challenges are spinal, from one end to the other. It is usually considerate enough to limit the areas of heightened sensations to just one or two at a time which I can usually manage to work around by adjusting my body mechanics, or changing arm dominance, or taking narcotics. It is a rare day indeed for everything to be going off at once, but today is just such a day and there isn’t much that I can do about it. My “physical ADD” system isn’t useful on a day like today because I can’t make it back around to a task I started, adjusting body mechanics doesn’t help because they all cause problems, and narcotics are only marginally helpful so I don’t even bother increasing dosage because it would mean taking an unsafe number of them to even accomplish a simple task, and the risk is just too great…getting some housework done or even doing something pleasant like my art isn’t worth dying for.
After living with these sensations for most of my life, I can pretty accurately tell the difference between muscle and nerve messages. Today it’s all nerve. I can’t tell you why I’m experiencing this electrical storm in my back, and that’s always been a source of real frustration for me. Maybe it’s a storm front coming, or maybe it’s just that I slept weird, but not knowing the “why” of it gives me a scary sense of being out of control. Days like today are a great opportunity for me to practice the art of being at peace even when I have no control. I’ve learned a lot from my body over the years about having no control, especially about the external stuff…chores, projects, outings, etc., and “keeping my peace” even in the face of this external chaos is getting to be quite natural. I’m pretty flexible as to what activities get done, or which functions I get to attend on a day to day basis…I am Bamboo. But this internal loss of control is still a challenge for me because of how completely it wipes my thinking. Losing control of my thinking scares me.
As I got out of bed and began to move slowly around the house, I was overwhelmed by blooming electrical episodes in my back that lasted only just seconds, but the intensity was such that whatever thoughts had been going on in my head were completely cleared. It’s a bit surreal to have physical sensations so strong that it entirely wipes out all mental processes, especially when it happens 4, 5 or 6 times an hour. I realized pretty quickly that today was going to be a day that I would not have physical or mental control over anything…my will would not be done.
So here I lay, in a position that is keeping my body semi-quite, watching “Lonesome Dove”, drinking lemonade, eating jelly beans and enjoying the idea that my husband and daughter will get to go out and enjoy a good surf session this afternoon. Am I sad? No. I’m grateful that there’s a place I can be, physically, that offers a bit of relief from the electrical firings. I am still feeling them, but because I’m at rest, allowing my muscles to relax rather than trying to perform any kind of movement (except the poor typing!), the electrical “blooms” just come and go without creating a problem with motor function and are therefore less disturbing. I just watch them come and go, paying attention to where, how often, and whether they are triggered by a subtle muscle movement or if they’re just random.
I’m not a doctor so I can’t give you a medical description of what’s happening with these electrical “blooms”, or the technical explanation of what the results will be; I only know by personal experience what comes next. It seems to me that these electrical signals, although unintelligible to me, are speaking to the muscles in the areas surrounding the source. Judging by the eventual reaction of the muscles, I’m guessing that the electrical message is “Help! Protect me!” because the muscles (in today’s case, all of them) then plump-up, get very rigid, and restrict all body movement through the use of intense muscle messages…rolling over in bed becomes impossible! The good news is that when the muscles get into their protective mode, the electrical storm will most likely have passed and the muscle inflammation and stiffness is, for me, a much more manageable situation…heat, water therapy, wearing a back brace, and medicine will usually remedy the situation adequately. I don’t imagine I’ll be up and doing projects tomorrow, but maybe I’ll be able to be out of bed…and that’s always good. All those projects I woke up with in my head? Well, they’ll just have to stay in my head for a while longer. I’ve become quite good at working on projects in my head…my imagination is such that I can build things, mentally, for hours on end, using power tools and everything! The up-side is that when I actually get to work on the projects in reality (if that day ever comes), I’ll have thought through, and worked out, a lot of the engineering problems. This kind of attention to detail is one of the small gifts of having prolonged periods of inactivity. I know without a doubt that I would never, ever, had taken so much time in contemplation before…I would have just jumped in, made mistakes, and had to redesign along the way. I might not get as much done as I did before, but what I will eventually get done will be well considered and I believe, of higher quality.
The sun is setting and the sky is beautiful shades of pinks, oranges, and baby blue. I have hopes that tomorrow will be a better day for me physically, but if it’s the same, that okay too. I will be grateful, as always, for another day to love my family, love myself and give thanks for the blessings that abound in my life.
The “Big Bad” a.k.a worker’s comp insurance companies and their evil minions
Posted by Xine in The Big Bad on June 18th, 2009
Imagine, for a moment, an enormous fire-breathing Dragon. Not the Asian idea of the Dragon (a benevolent guardian) but the evil, malevolent European version, like “Smaug”, J.R.R. Tolkien’s creation in The Hobbit…a vile, soulless creature concerned only with the massive wealth it steals and sleeps on…a Dragon who flies out of its cave to gather more treasure, terrorize the nearby villages, and kill anyone who crosses its path.
I’ve asked you to visualize the Dragon because I believe that they are the most accurate analogy for the worker’s comp insurance company and the lawyers who do their work. If you are currently locked in a relationship with them, keeping this image/analogy firmly in mind might help you come to terms with the overwhelmingly destructive nature of the relationship.
Like the malevolent Dragon, they are huge entities that accumulate stolen wealth and sleep on it. Dragons do nothing useful, nor do they create anything beautiful in society and neither do worker’s comp insurance companies; theirs is an existence of stealing, destruction, and death. The relationship between the insurance company and the claimant is very much like the relationship between the Dragon and the people who live in the near-by villages… It’s not that the Dragon necessarily hates any one person in the village, humans are simply too insignificant to generate even that much attention. Similarly, the individual worker’s comp claimant is not significant enough to even be seen as a real person, but viewed only as a potential threat to the insurance company’s treasure horde. The only thing they truly care about is their treasure…they steal it, horde it, and protect it at any cost.
One of the biggest mistakes that a worker’s comp claimant can make is believing that the malevolent actions of the insurance company are personal…that they are being singled out and personally attacked. It’s not true. The malicious behavior of the Dragon, and the insurance company, is just their true nature…burning, destruction and death is what they do…it’s just company policy.
Like the Dragon, the insurance company is too big to fight by yourself (especially in a weakened physical state) and it’s important to find, and hire, a warrior (lawyer) that you can trust to help protect you, your family, and your home from the ravening attacks of the beast.
It is important to realize and remember always that the evil, soulless greed of the Dragon (insurance company) contaminates and poisons everyone, and everything it touches. Also, never forget that the evil, soulless greed of the Dragon is transferred to its treasure and anyone who attempts to acquire Dragon treasure, by any means, will be infected with the poisonous greed and villainy of the Dragon itself.
Every single person working directly for them, or receiving payment for services from this entity, is exposed to the vileness and corruption of the beast, and depending on the intimacy and duration of exposure, will eventually succumb to the overwhelming evil and will inevitably become a malevolent greedy beast.
If you have doubts, I challenge you to take a good long look at the people who work in this field, or who work in a supportive capacity for the worker’s comp insurance business, and you will see, as I have, that they are contaminated with the stink of greed, have grey cancerous auras, and lack any indication of a human soul. I haven’t checked but I think they may even have spiked tails.
I’m not suggesting that just because they are evil and that their treasure is poisoned that you must allow the insurance company to destroy your world, burn your house down, and eat your family…not at all. Fight! You must continue to do everything you can to protect yourself and your loved ones. What I am suggesting though, is that you keep the essential truth of the situation in the forefront of your thinking…that there is no “treasure” worth having from this monster. Although it is fair and just that they compensate you for the financial burdens created by the injury, and for your inability to produce “wholesome” income for yourself and your family, the problems come when one expects, desires, or fights for excessive “Dragon treasure”, this action will invite the greed, the malevolence and the emotional cancer of the beast into your world and this is too great a cost to pay. Irregardless of the physical injury you sustained in the original injury, even if you lost both a leg and an arm, you will be much better off without the Dragon in your life because dancing with the Dragon will maim and corrupt your soul, and there is no compensation for that.
There are many kinds of soul-sucking, life-draining, and energy-zapping situations out there in the world…but few are as sinister as the worker’s comp insurance company or the lawyers that work for them. Being a claimant in a worker’s comp case is like having someone really wealthy wrongfully prosecute you and make you pay tons of money (that you don’t have) and make you spend months and years defending yourself…or like having someone totally wreck your car, refuse to do anything about it, then say it was actually YOUR fault, and leave you stuck with the financial consequences…or like having someone spread nasty, malicious lies and false rumors about you in the town where you live. Actually, now that I think about it, being a claimant in a worker’s compensation case is like having ALL of these scenarios going on at the same time!
I’m talking about the “Big Bad” today because I received another meaningless correspondence from the Dragon yesterday, and I found myself having some negative thoughts about the situation. I didn’t allow myself to dwell on those negative thoughts, I just watched them as they crossed my mind and I quickly let them out the back door. What I did allow myself to dwell on was the reaction itself because that “knee-jerk” response was an interesting insight into the potentially negative dynamics of being involved with a Dragon and other people/organizations that have no soul.
A critical fact to keep reminding yourself, as often as you can, is that they really don’t think of you as a person at all. They don’t care what really happened, they certainly don’t care what you’re feeling (physically or emotionally), and they especially don’t care if you ever get better. The ONLY thing they care about is getting you out of their books without giving you any more of their treasure than absolutely necessary. It hardly seems to matter to them that the amount they end up paying their attorneys (whose aim seems only to generate more fees), and to the medical “experts” (read “hit-men”) is many times greater than what it would cost to simply pay the real medical expenses. It seems almost as though doing the “right thing” for an injured worker would bring them professional shame and disgrace…maybe the other Dragons would mock them as weaklings.
It is very dangerous to your mental health to think, for even a second, that your employer’s insurance company and their attorneys are actually human beings with real human emotions like compassion or empathy, or that they have any virtues at all. Remember, they’re Dragons…they do nothing useful and create nothing beautiful. They live and work without integrity, they lack any sense of fairness, and they have no ethics or morals to prevent them from screwing with you in any way possible. To believe anything else of these “people” is to set your-self up for some seriously shocking illusion-shattering, so it is best to keep reminding your-self, mantra-like, that “they don’t give a shit about the truth”, “their malicious actions and bad behaviors are company policy…they do this to everybody”, and most importantly “they can’t take away my peace”.
I’ve been forced to endure some very bad behavior from “senior adjuster” (head dragon), Carl Watanabe of SeaBright Insurance Company, and their attorney, Colette Gomoto (dragon minion) of Wong & Oshima, here in Hawaii. They have spent the last 5 years and probably well over a quarter of a million dollars, wrongfully and repeatedly denying the medical attention and services that I desperately needed to regain even a minimal level of physical functioning. They have illegally sent my medical records to a known “medical hit-man”, Dr. Bruce Hector, and willingly paid him $5,000 for a “records review” that was such an obviously biased hatchet-job, and the portrayal of me so blatantly fictitious, that I couldn’t even really take it personally… because it wasn’t me! And yet as easily as they spend money in attempts to damage and stall my case, they have continuously refused to pay the real medical providers whom have been the most instrumental factors in my continued recovery; Chiropractor Randall Shibuya and LMT Mary McHugh (a combined sum of less than $5,000). These dedicated medical providers have continued to treat me without payment for over a year because it was so unequivocally obvious how much good their work was for my function level. They are medical professionals of the highest order with such a strong calling to heal that they could not turn me away for lack of money. I am so grateful to have had them both in my life and working on my behalf…all of the progress that has been made in my function level is due to their unflagging support and I will make sure that they are paid even if it takes me years of payments.
The insurance companies have very deep pockets, lots of employees, and plenty of resources to keep up this kind of harassment for years. It’s a good idea to get the best attorney you can find to help defend you from these attacks, and believe me, the attacks never stop…they don’t care if their actions damage you, your medical providers or your family. They will pound you until you are bloody, broken and hopefully beaten to the point were you can’t, or don’t want to stand up to them anymore. Having an attorney that you trust will offer you a little mental respite from this legal ass-kicking, but their actions give the expression “adding insult to injury” so much significance.
Your only concerns, on a day-to-day basis should be 1.Getting as much physical function as you can…and, 2. Being at peace with who you are right now, in the body you’re in right now.
You can’t fight the Dragon and not get burned. Their treasure is foul, poisonous and tainted by their greed. You are far better off getting as much psychic distance as you can between you and the Dragon. Let your warrior-for-hire do battle…hopefully they’ll know how to shoot the Dragon in their soft, lily-white underbelly.
Another subject that needs discussion is the psychological reaction to an entity who keeps insisting that you must“prove” to them just how injured you really are. Keep in mind that there will never, ever, be enough valid, objective “proof” for them, and even if there is plenty of medical evidence, they will refuse to acknowledge it anyway… you can go blue in the face detailing the ways in which your life, and the lives of those close to you, have been damaged by the injury but nothing good will come of it and you will only be harming yourself. The time and energy you spend mentally reviewing and cataloging the negative effects of the injury in your life will only serve to bring all those images to the forefront of your thinking and you might actually begin to believe that your body and your world is ruined, that you will never have the kind of life you had, and that you are truly “suffering in pain”. This is an insurance company trap because they really DON’T CARE! They easily can and will pay $5,000 for a “records review” that will be submitted as “ objective medical evidence” that you’re a big-fat-faker! Do you really want to get into a pissing match over how messed up your body/life is? Really bad idea…bad for you anyway. This kind of thinking is totally anti-Chronic. We don’t talk about or use the word “pain”, and we don’t “suffer” anything!
We are Chronics. We have bodies that move through the world differently than most, not worse, just different. We practice daily awareness of our own bodies and focus on the accomplishment of tasks. We might have to do things more slowly or maybe not at all…but we do whatever we can do, and we’re grateful.
I refuse to allow the insurance company or their attorneys any real-estate in my thinking…they are messed up, wrong-minded droids who desire only my destruction or elimination. I’m sure they’d throw a party if I was hit by a bus and killed…another case successfully closed! It wouldn’t be “personal”, they’d just be happy to have that file closed, once and for all.
So pay close attention to your thinking and your reactions in the caustic relationship with worker’s comp insurance companies and their lawyers. The concept of providing objective “proof” of your limitations before they compensate you is an illusion and serves only to focus your thinking on what your life isn’t…what you can’t do anymore…what you’ve lost.
Defy them…stay focused on how grateful you are for what you do have, how excited you are about facing the challenges of working with a “new” body, and basking in the glow of an inner peace that cannot be touched. This kind of thinking is the only way to survive a prolonged engagement with an entity as vile and soulless as the worker’s comp insurance company.
I invite you to share your own stories of “dealings with the beast” because that’s one thing the “villagers” have that we don’t…a community. We need to remember that we are not alone in this experience, there are thousands, maybe 100’s of thousands of us and we need to stand together (even if only virtually) to comfort and support each other through the attacks…to share with each other what has worked and what didn’t. We might not be able to defeat the Dragon outright, but together we can survive, grow, and live without fear.
Go in peace Dragon Slayer!
Being Lora Croft
Posted by Xine in Being Lora Croft, The Chronic Mind on May 27th, 2009
If you’re living with the effects of an injury, like I am, you know for yourself that there are high-function days, low-function days, and the occasional, zero-function days.
Sometimes it’s really clear why the function level changes. If it’s gone up, it might be because of the perfectly balanced workout the day before, or the massage treatment, or the steroid injections, and more often than not, in my case, a chiropractic adjustment. The same possibilities exists for a move in the other direction…you may know exactly why there has been a drop in function. I like it when I know why; when I can say to myself (and others), “yep, had a little bit too much fun yesterday!” Being able to assign cause to the effect, for me, just makes it seem like a more “normal” scenario…everybody feels their body more intensely after pushing themselves to their physical limits (I try not to dwell on the dramatic change of my “physical limits” from pre to post injury, because that’s just not helpful), so I’m no different than anyone else in that regard.
The psychological difficulties come, for me, when there is a sudden and dramatic drop in function level for NO REASON AT ALL! Or so it seems that way. I know there’s a “reason”, it’s the changes in my physiology from the injury. But not being able to see the “causes” for the “effects” makes dealing with the “effects” more difficult for me, mentally. This aspect of living with an illness or injury, the seemingly arbitrary change in physical function, can be a most frustrating phenomenon. The first thing that others want to know is “what happened?!”, and that’s a hard one to answer honestly, because honestly, you just don’t know what happened or why.
It was precisely this situation that led me to “Being Lora Croft”. I reasoned (one day while lying in bed unable to move) that if my body, without a reasonable explanation, could force me to endure the heightened physical “effects” of an unseen “cause”, then it was perfectly logical and acceptable for my mind, without reasonable explanation, to force an unseen “cause” onto the situation.
I happened to be watching Lora Croft - Tomb Raider at the time, and she was falling through a stone shaft into a secret ancient tomb and eventually forced into hand-to-hand combat with several 8 foot tall stone guards (re-animated by a magical liquid) and then she was picked up by a flying stone griffin, carried out of the tomb and dropped to the earth when the griffin (exposed to sunlight) turned back to stone…she gets a gunshot wound in the arm and eventually jumps off a waterfall to save herself and the artifact. As I lay there watching I thought, “Wow, she’s really going to be feeling that in the morning”, and that’s when it came to me…I was Lora Croft…the morning after!
Now, at this point you may be saying to yourself, “this is just the product of an overactive imagination; nothing more than a fantasy!”, but it does solve a lot of problems. Firstly, it gives a reasonable explanation and justification for the extreme physical sensations being felt, and secondly, it gives you something really cool to say to those who ask “what happened?!” You can say, will all sincerity… “I was forced to thwart the Illuminati and steal back the ancient key that allows its possessor the ability to control time…rough day”. I guarantee the questions will stop right there.
If you haven’t seen the movie yet, I recommend that you do so immediately, better yet, own it. There’s nothing like watching our female Indiana Jones when you’re having a low-to-zero function day. Being Lora Croft is a perfectly “unreasonable” mental answer to the apparently “unreasonable” physical sensations you are feeling.
Balance
Posted by Xine in Balance, The Chronic Body on May 19th, 2009
My happy place.
I was reminded today of another purpose, or lesson, that strong sensations from the body serve…They remind us to have better posture, to move smarter, maybe a little slower, and to move with awareness.
Have you ever noticed that the less you hear from your body, the more you take movement for granted? That happens to me all the time. It’s like I’m so ready not to have to “pay attention to my movements”, that I let my mind drift away from my body and into my head (because it’s so much fun there!). When there are a few days of “body-quietness”, my mind goes wild with excitement for all of the projects and pleasures that I have had to ration because of low-function days, and I tend to want to do too much, too soon. I think that this lesson of “balance” is ultimately my biggest challenge on a day to day basis; to keep a perfect balance between body-awareness and mental-drive.
Don’t get me wrong, I don’t think that this phenomenon is necessarily a bad thing, and in many ways it’s more of a blessing than a curse. It’s almost like a kind of “pain amnesia”; I have a hard time remembering what it was like to be limited, until I am, and then after a few weeks of that, I have a hard time remembering what it was like not to feel so much.
I was feeling my body today. Not in a drastic, “I-can’t-do-anything” kind of way, but just a steady stream of medium to loud reminders to “pay attention”! Days like today remind me that walking that fine line between mind/body-awareness takes constant vigilance.
Getting into the pool this afternoon was perfect. It allowed me to relax into the weightlessness of the environment and to let the water hold me up, instead of gravity pulling me down. In the water, the body can move in ways it can’t on land. It’s the most amazing feeling to bend, flex, and move my arms, legs, and body through such a huge range of motions; Motions that my body somehow always joyfully remembers. I watch the older women in their water aerobic class and I don’t feel bad that I am not doing all those fast moving jumps and kicks, with pumping arms and bouncing feet, because for me, it’s not about keeping up with the beat, or counting down from 20, it’s more like a quiet conversation with my body, and that doesn’t work so well to the beat of “Dancing Queen”.
In the water, I get to let my body go through the action of a full-stride run…in slow motion; a mindful, fully muscle-conscious motion. What a rare event that is! In what other circumstance, besides maybe zero-gravity, can you actually go through the muscle-actions of something like a full sprint in slow motion? Whether you were born with special physical limitations, or had those limitations given to you by illness or injury, I guarantee that spending a little quiet time with your body, in the water, will put you into a more intimate and loving relationship with your body.
Sometimes it’s a challenge to love a body that requires so much attention, but it’s important to treat yourself with the same kind of compassion that you would give to anyone that you loved. You deserve nothing less.
So when you’re having a high-function day with light body-messages, try to remember the lessons of the low-function, loud message days…Balance. And when you’re having a low-function day with loud messages…pretend you’re Lora Croft. (next post…Being Lora Croft)
When you can’t run…FLY!
Posted by Xine in The Chronic Body, When you can't run...Fly! on May 12th, 2009
I used to think I was bullet proof. There wasn’t a sport I wouldn’t try or wasn’t good at. I just loved the rush of pushing my body to its limit, whether it was running, body boarding, jumping horses, racing motocross, go carts, sailing or ocean swims. And I especially loved anything fast…a total adrenaline junkie.
A lower back injury at the age of 26 slowed me down for about 5 years, but I was eventually able to reclaim roller-blading, body boarding, and horses into my life (no more jumping though!). It wasn’t that I no longer felt the effects of the injury, but by learning what worked for my body (massage, acupuncture, and exercises) I was able to begin adding activities that enhanced my overall physical condition. I wasn’t able to get everything back, but what I had was enough to keep the adrenaline pumping and keep me in shape.
A neck injury and an unsuccessful fusion surgery (in 2005) have, once again, brought me back to the beginning. After 4 years of weekly massage and chiropractic treatments, I have, so far, only been able to engage in very light “range-of-motion” type workouts in the pool and it’s definitely lacking in the “thrill” department, especially when there are 75 year old ladies in the pool working out harder than I do (but I make it look like a cool water ballet, so that helps my ego).
I miss the “rush” on so many levels beyond just the great workout; I miss that flood of endorphins that clears away all the stress and mental garbage of the day. That aspect of intense exertion was pure joy for me, and over the last 4 years it’s been one of the hardest things for me to accept…that the thrills are gone. No more roller-coaster rides.
Every year, on the 4thof July, we have a celebration in our small beach town of Kailua, and every year a stunt pilot performs aerobatic maneuvers that take my breath away. I stare up into the sky and imagine that I’m up there with him, doing those “death spirals” and “barrel rolls”. For the last eight years my husband, Mark, has listened to me wish and dream, “One day”, I always say “I’m going to do that!”
Before the neck injury I really believed that it was a possibility, but with a condition that makes riding in a car difficult, I kind of had to let my dream of aerobatic flying go…until last month.
On my 47th birthday, my husband told me he had met a glider pilot who would take me up and do all those stunts I’d always dreamed of, and my instant reaction was “Hell yes! I don’t care if I can’t move for a month, I am going to fly!” That was the most amazing day I’ve had in a very long time, and the best part was that it didn’t hurt a bit! A glider floats on air so smoothly and the G’s are so graceful and fluid that I actually felt better after flying and hanging upside-down!
I’ve gone up since, with equally fantastic results and I’m determined to get my pilots license so that I can have my adrenaline fix anytime I want it! Who could have imagined that glider flying would be the key to getting that rush back into my life? I have my wonderful, thoughtful husband to thank for the greatest birthday gift ever! Not only did he give me the gift of flight, but he gave me back something I thought was gone forever…those fabulous rushing endorphins! I love you sweetheart!
Tow Ho
Smoothest landing ever!
Getting it done with Physical ADD
Posted by Xine in Physical ADD, The Chronic Body on May 11th, 2009
Having a perfectly functioning body is a blessing, to be sure, but it is also a blessing to be exactly what you are, right here and right now. As long as you are still breathing, and still able to think, there is a whole world of new blessings waiting for you to discover. Sometimes when something as important as a perfectly functioning body is taken away from you, you can choose either to lose yourself in the suffering of pain, be miserable and depressed, or you can choose to go deep inside yourself and find the gifts that nuturing a spiritual body will bring you. It doesn’t always take losing one to gain the other, but one of the blessings of reduced function is more time for contemplation! It gives you more time to exercise the spiritual body which needs to begin to stretch and flex its muscles just like a physical body. Your spiritual body can be stronger and more fit than a physical body ever could be, and it takes just as much focused discipline to be a spiritual athlete as it does to be a physical one.
It’s hard to describe what it’s like to go from being physically able to do whatever you want, to being limited, by that same body, to the point of not being able to tie your own shoes. Those of you who were not born with physical limitations have experienced this dramatic change for yourselves. When your body is fit and strong it’s so easy to take it for granted; you just don’t need to think about it…running up a mountain would be as natural for you as drawing breath. It’s only when that body no longer functions like it used to that the body/mind relaationship becomes a conscious one. And for many of us that relationship doesn’t start off as a healthy one. There’s anger and frustration, and your body almost seems like an enemy (more about that topic in a later post).
There was a time when not being able to accomplish a task from start to finish made me really upset. It got to the point where I found myself not wanting to do anything because I knew I wasn’t going to be able to finish it, or worse, that I’d hurt myself trying too hard and then be laid up for a few days. But not doing anything because I was afraid I couldn’t finish, or worried I’d hurt myself, was even more frustrating. It’s hard to have an extremely active and creative mind without the physical ability to execute any of those ideas.
Over time, I learned a way to bridge this gap between mental desire and reduced physical function. I call it Physical ADD, and just like the regular ADD (Attention Deficit Disorder)…it can be a good thing.
Getting things done, or getting anything done on low physical funtion days, can seem like a really tall order. But even if you’re physically limited to the house, there is a way to accomplish tasks even on extremely low-function days…it just takes longer and you have to chill-out and shorten your “to-do” list (what to do with Zero function days will be discussed soon!).
For me, on low-function days, the first thing I do is get out of bed , start moving slowly and gently asking my body to walk and stretch to get the blood flowing and the muscles warmed. I’ll know within a few minutes which parts of my body are sending strong messages, and whether those messages come from muscle or nerve, and I’ll know how to move accordingly. Muscle messages, for me, will sometimes respond really well to movement, so even if it’s a struggle at first, I keep moving. The nerve messages, in my situation, take a completely different approach and are the biggest indicator of what the function level will be for the day. Medication can be helpful in turning down the volume of both muscle, and to a lesser degree, nerve sensations. I always have a stack of ice packs in the freezer and moist heat as well. If you’re lucky enough to have a pool or Jacuzzi nearby, use it!…get in it first thing in the morning and as often as possible all day!
Learning your body’s special language is one of the most important tools for a Chronic. It’s no different than a race car driver taking his/her Formula One around the track for a warm-up lap…they can hear and feel if anything is off with their car and they take these signals seriously, just as you should with your body’s messages. Fortunately for us we don’t hit walls at high speeds and burst into flame if we don’t listen to our body, but sometimes it can feel that way. Your body is an amazing machine, and it has to be cared for as carefully and lovingly as a high performance race car.
After you’ve stretched and assessed your body, and you have a pretty clear idea of your immediate function level…start doing something that you want done without the notion that you’re going to finish the task, just start doing it. It is vital to be aware of the bodily sensations that change or increase while you’re performing your task because you’ll need to know when to stop and move on to something else.
On a low-function day where I am able to stay out of bed but find it difficult to maintain a continuous movement, I can have 3 or 4 different projects going on all day. To an outside observer it would look something like this… fluff the pillows and get the sheets and blankets fixed on one side of the bed and stop. Move to the bathroom and take a few pieces of laundry (very small armful) to the machine and put them in but doesn’t start the washer. Move to the kitchen and organize the dishes to be washed on the counter but don’t wash any. Walk around the house looking for other dishes that need to go to the kitchen and brings them in. Rest on the sofa for 10 minutes and read a few pages of a book. Go back to the bedroom and make-up the other side of the bed. Go back to the bathroom and get a few more pieces of laundry to take to the machine. This time the washer is full and the load can be started. Then back to the kitchen to wash a few plates and stop. And so it goes, all day, for as long as I can keep moving. These simple tasks might take another person with a higher physical function only a fraction of the time it takes me, but that’s not really what’s important. What’s important is that you do whatever you can do, as long as you can do it, regardless of how long it takes you to accomplish it.
By breaking up all my tasks into tiny little bite-sized pieces, I’ve found that not only can I have a semi-clean house, I can also do some art projects as well. They are handled in exactly the same way (except it’s harder to stop when I should because I get so focused and excited sometimes). It’s taken a lot of practice and very forgiving family and friends, but the end result is feeling a small measure of success and accomplishment everyday and that feels great!…so what if the house isn’t going to be in “Beautiful Home” anytime soon, my home’s beauty isn’t in the physical, it’s in the spiritual…just like me.
Pain Pirates
Posted by Xine in Pain Pirates, Power of Words, Talking About It, The Chronic Mind, The Chronic in Public on May 9th, 2009
The world is full of Pain Pirates. You’ve met them, you know them, maybe you’re even related to, or live with one. Pain Pirates are those people who LOOOOVE to talk about what’s wrong with you, and more importantly, what’s wrong with them…how much it hurts, how deeply they suffer, what kinds of drugs they need to take. It’s like if they didn’t have the pain and suffering in their lives they just wouldn’t know what to talk about. Pain is their language and their relationship with the world, and they desperately want you to join them there… Because it’s lonely, and misery loves company.
Pain Pirates can be very seductive and entice you into their world with concern (quite genuine) about your pain (if they’re already aware of your situation). They want to lure you into talking about your physical situation, with all the gory details, and they will encourage you with heartfelt expressions of sympathy, and especially empathy, “I know exactly what you’re feeling; it’s so awful isn’t it? The way we suffer!” And then they will tell you, in dramatic, emotional detail, how they too, are living broken half-lives because of their illness or injury.
Getting out of this emotional hi-jacking means being prepared and arming yourself with elegantly polite phrases that will leave the Pain Pirate with nothing more to say to you…and they will learn soon enough that you are not willing to give them the emotional “booty” they were looking for. It does take practice though, especially the “elegantly polite” part. If you recognize that you’ve been living as a pain sufferer and want to be a Chronic, it’s probably similar to breaking any other bad habit, or addiction (and yes, “pain-speak” is an addiction, especially for Pain Pirates, ahrr). Let Chroniclife.org be your PA – Pain Anonymous, and steer clear of Pain Pirates like the alcoholic avoids booze.
You’ll need to have your verbal arsenal practiced and ready because Pain Pirates are everywhere, asking, quite innocently and with caring concern on their faces “How are you?”. I always say brightly, “Fine!”, “Great!” or “Couldn’t be better!” (if I know for sure I’m dealing with a Pain Pirate I don’t give the standard “And you?” in return but rather move the conversation to some other direction immediately, like…”You look lovely, did you do something different with your hair?” or “And how are your wonderful children, grandchildren, cats…(fill in whatever)” or even more generic “Isn’t it a beautiful day, the weather has been wonderful”.
Most people who ask “How are you doing?” are using this phrase as a default greeting and they’re hoping that you give them a “fine” so that they can move on to more important stuff, but the Pain Pirate will keep trying find the conversational button that will get you to engage in an intimate conversation based on your (or their) illness or injury. They won’t let you get away with a “Fine!” and their follow-up will be more specific, “Really? Your back / neck / knee / hip / cancer / ALS/ arthritis isn’t causing you pain?” The answer to this query is a little more complicated. You don’t have to lie, and in fact it’s better if you don’t; Better for them and good practice for you. In one sentence you can show them, without being offensive or condescending, how you are choosing to relate to your physical condition with a Chronic attitude. It might sound something like this, “Sure, I’m still feeling it, but I’m so grateful for the movement I have today, it’s great to be out and about, and getting to see friends like you! Everyday is a blessing!” What can they possibly say to that? It’s an expression of joyful gratitude for what is good in our lives and only a total asshole is going to try and take that away from you. Most Pain Pirates will realize that you’re not going to play the Pain-Game with them and they’ll either move to a topic that neutral or leave to find another “Pain-Sufferer” to engage.
Like I said before, be prepared and practice, practice, practice. If you do end up getting hi-jacked, don’t worry about it or feel a failure. The mere fact that you were able to recognize, and identify the interaction as a hi-jacking is a huge deal! “Pain-Sufferers” don’t even know how damaging this kind of engagement is and they participate fully, and with great eagerness in these “let’s compare our Pain and Suffering” scenarios.
Dealing with Pain Suffering Pirates successfully will make you feel really good about yourself because you will have said –OUT LOUD- why your life is great and how thankful you are for everything that you do have and are able to do. It might also have the net effect of waking up the “Pain Pirate” to the joy and freedom of a Chronic lifestyle. They will wonder how you manage to be so happy, upbeat, and grateful in your physical condition. They may even begin to ask you how you do it, and you can volunteer to be their ChronicLifeguard.
Talking About Chronicity
Posted by Xine in Pain Pirates, Power of Words, Talking About It, The Chronic in Public on May 8th, 2009
Redefining and reprogramming the internal messages between your body and your mind (and vice versa…but we’ll talk about that later), is a crucial first step to becoming a High Functioning Chronic. It’s vital that your internal dialog be one of gratitude, strength and encouragement.
Because this concept is so important, I’ll take a bit more time here and try to describe the difference between a “Pain sufferer’s” internal dialog, and a Chronic’s internal dialog. Being aware of, and consciously managing the way you mentally respond to strong signals from your body is an essential building block for successful chronicity. The mental responses need to remain factual and grounded in the physical experience rather than being emotional and linked to your “self”. The sensations are happening in your body, don’t let them happen in your thoughts too.
“Pain Sufferer” Example
Multiple Levels of Herniated Discs in Lower Back: While bending slightly from the waist to make up the bed in the morning, a sharp stabbing sensation is felt in the lower back and the thought-reaction is “OW! That hurts! It’s so painful I could cry”. The mind then answers this reaction with “your back is so bad you can’t even do something as simple as making up a bed without pain! How are you going to get anything done today with this kind of pain and why should you even try? It will just be more pain and you’ll be in tears before noon. You are worthless as a homemaker, spouse, and parent (fill in the blank)”.
Okay, that’s a gross exaggeration, but as you think about your own psychological relationship to your body’s sensations, maybe you have your own example of a time when the physical limitations/sensations created a mental conga-line of disgust and self-pity. I think you get the point. For the “Pain Sufferer”, the message of “pain!” triggers a series of negative thought-reactions that can sometimes open up some very dark doors. Suffering in pain and being unable to accomplish even simple tasks can sometimes lead to feelings of self-pity, inadequacy and self-loathing, and those feelings hurt worse than the feelings in your body.
“Chronic” Example
Multiple Levels of Herniated Discs in Lower Back: While bending slightly at the waist to make up the bed in the morning, a sharp stabbing sensation is felt in the lower back and the thought-reaction is “Whoa, strong one. This movement isn’t working for me right now” and the mind answers with “we’re working with less function this morning so it would be best to stop this action and move to something else. It’s going to be okay, I’m still standing and I’m grateful for that. I’ll come back to the bed-making later…or not.”
The Chronic realizes that physical function can fluctuate and that the accomplishment of tasks is directly related to their function level and not an indication of their value as a person. As function level increases so do activities, and just because you can’t do an activity today doesn’t mean that you can’t try again tomorrow. Chronics can distinguish and differentiate between a faltering physical functionality and personal success.
When this internal conversation becomes fluent and automatic, you will find that your external conversations will also be rooted in gratitude, strength and encouragement. You will no longer talk about how much “pain you’re suffering”, because for you it is no longer “pain”; They are simply sensations that affect your function level. You’ll be amazed how quickly the conversations will turn to subjects other than your chronicity, and this is a good thing. Just watch out for the “PAIN PIRATES”!