Friday, August 19, 2011
Elliot Krane: The mystery of chronic pain | Video on TED.com
Thursday, July 14, 2011
To Be or Not to be Broken—this is the question
He was born without arms or legs. Is he broken? He doesn’t think seem to think he is. He found a way to find joy in his life even though he was born into a condition that would qualify as “…tried men’s souls.” I can’t even begin to imagine his life. I admire this man. I admire that he shares his love and inspiration with so many people. We need people like this to share how they find a way to step beyond adversity. His way is Christianity. There are many ways, though.
Saturday, February 12, 2011
LETTER TO FAMILY & FRIENDS (originally written in 2002/edited in 2007)
Sometimes I find other people's words express what I am feeling better than my own words. This letter written by Reta Honey Hiers, expresses what I do my best to tell my family and my doctors. Some days I can be almost normal and other days I feel fortunate if I can wash the dishes. I can't predict when the good days will be or what I will do that will set my back for days at a time.
I hope that this will help other families who have loved ones in chronic pain understand a bit better.
Dear Family and Friends,
This letter was written in hopes of improved understanding of those who live with symptomatic Tarlov cysts and the chronic pain, nerve damage, and life altering changes they cause.
Having cysts on my spinal nerve roots and the resulting nerve damage causes chronic pain and means many things in my life change, and a lot of them are invisible. Most people do not understand about relentless, intractable pain and its effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand, these are the things that I would like you to understand about me and my medical diagnosis, Tarlov cysts.
Please understand that living with this medical condition doesn't mean that I am not still trying to live a "normal" life. However, I spend most of my days and nights in considerable pain and exhaustion; sometimes I probably don't seem like much fun to be with, but I'm still me…….. stuck inside this changed body. There are things that I can no longer do, and I have had to accept that. I worry about how the changes in me are affecting you. I care very much about my family and my friends, and I'd still like to hear you talk about your life, your family, and your activities. I like to talk about things other than me and my medical condition and pain. I still have the same interests I have always had; there are just some of them I can no longer actively pursue. I am grateful, by the way, for the things I can still do, my faith in God, and the blessing of your support, love and friendship.
Please understand the difference between "happy" and "healthy". When you have the flu, you probably feel miserable with it, but in a week or two you are back to normal. I've been living with this diagnosis and its symptoms for years; I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in pain, or not extremely fatigued, or that I'm "getting better". Please don't say, "Oh, you're sounding good!" or "But, you look so good", as if nothing could possibly be wrong. When I am around you and others, I try to smile, laugh, and enjoy being with you. I am merely coping. I am happy to be with my friends and family and trying to look normal and act normal; it does not mean that I am not in pain or that I have had a miraculous recovery.
Please understand that being able to sit, stand , walk, or be sociable for 15 minutes doesn't necessarily mean that I can sit, stand , walk, or be sociable for thirty minutes, or an hour. Just because I managed to sit, stand , walk for thirty minutes at a time yesterday doesn't mean that I can do the same today. With this medical condition, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up, and how painful the day will become; in most cases, I never know from hour to hour. That is one of the hardest and most frustrating components of living with Tarlov cysts and chronic pain. It sure makes planning ahead difficult, and it means I have had to adapt to an altered life style.
Please understand that chronic pain is variable. It's quite possible that one day I am able to take a walk, go out to lunch with you, go shopping , or to church, although when I get home or the next day I'll have trouble walking to the next room. Please don't be confused by saying or thinking, "But, you did it before!" or "Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to remember how very lucky you are to be physically able to do the things that you can do. I have to re-prioritize my plans and activities constantly, because of the pain and other symptoms that persist. I am still learning each day to cope with what I can no longer do, and to remain very thankful for what I can do.
Please understand that "getting out and doing things" does not always or necessarily make me feel better, and can often make me seriously worse. I really try to be as active and involved in activities as I possibly can, as far as the pain and symptoms allow. If I was capable of doing something that would take it away all of the time, don't you know that I would? You know me and know how my life was before these Tarlov cysts and resulting symptoms began and have continued. Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more symptoms and an increase in physical pain. The recovery time from doing something I should not do, or longer than I should do it, is significant. I call it ODI (overdoing it) and I pay for it dearly .You can't always read the pain on my face or in my body language. The pain is not caused by depression. The sadness and sometimes irritability that you might hear in my voice (even though I try hard to hide it) is from the pain and adjustments I have had to make in my life to go on, and it is due to the changes such as the loss of my job/career, my inability to jump in the car whenever I want to run errands, see a movie, go to a restaurant, visit friends, shop, clean my house, work in my garden, etc. as I did previously.
Please understand that if I say I have to sit down or lie down now, that probably means that I have to do it right now; it can't be put off or forgotten just because I'm somewhere else, or am in the middle of doing something. I have had to lie down in the floor in my doctor's office when I had to wait too long, and could no longer sit or stand. Chronic pain does not forgive, nor does it wait for anyone.
You may have wondered why I don't just take something stronger for the pain. I have tried many different medications, as well as surgery which did not result in improvement for me, although it has for many patients. I have developed many more cysts since my surgery. I have been made worse, not better, due to side effects or allergic reactions from the medications. These symptomatic cysts on the spinal cord nerves are rare, and are not related to more commonly understood problems, such as herniated or ruptured discs. Currently, there is only a handful of courageous Neurosurgeons and Interventional Neuroradiologists in the world who are seeing the majority of patients with this rare disorder and are willing to attempt treatment. Currently, the treatment outcomes are not indicating a high percentage of "complete cures"; however many patients are much improved.
If I seem touchy, irritable, or distant occasionally, it ¡s probably because I am. It's not how I try to be. As a matter of fact, I try very hard to look and act normal. I hope you will try to understand. I have been, and am still, going through a lot of change. Chronic pain is hard to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and to live my life to the best of my ability. I ask you to bear with me, and accept me as I am, though changed from the way you knew me before TCs. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.
In many ways I depend on you. I need you to call or visit me when I cannot go out. If you live with me, sometimes I need you to help me with the shopping, cooking, cleaning, gardening. You know me well enough to know it is very difficult for me to ask for help. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss so much. I know that I have asked for a lot of understanding from you, and I do thank you for listening to my innermost thoughts on paper. It really does mean a lot to me that you care. My head and heart are still the same; it is my body that has changed, and my life as I knew it before Tarlov cysts has changed. One of my most heartbreaking moments was when my 9 month old grandson, with a big smile on his face, reached his arms out to me to pick him up and hold him, and I could not lift him. That was over 10 years ago and my granddaughter is now 4 years old; I am concerned that they will never know their grandmother as an energetic and strong woman. These may seem like little things, but it is sometimes those little things that make you aware of the changes Tarlov cysts have caused. Thank you for trying to understand what I myself do not completely understand. I appreciate your love, concern and prayers. This new journey of learning to live with this medical condition has blessed me in many ways. I have met many new friends along the way and find myself surrounded by God's blessings in my life each day.
My career was spent as a nurse and healthcare/medical educator. I plan to contribute my time and energy to the best of my ability with God's new direction for me in my life. I have been and will continue to focus on the future growth and operations of a Foundation, whose purpose is to promote research and education for the medical community and the public, for improved understanding and treatment for Tarlov cysts. The Tarlov Cyst Disease Foundation's vision is of a future in which Tarlov Cyst Disease is well understood, accurately diagnosed, and easily treated, so that those afflicted should not suffer needlessly. We hope to make the path a little easier for others with this rare diagnosis; we hope our efforts will bring about a cure in the future.
God bless you for caring,
Reta
Reta Honey Hiers, R.N., C., President
Tarlov Cyst Disease Foundation
www.tarlovcystfoundation.org
retahoneyhiers@tarlovcystfoundation.org
Monday, January 31, 2011
Resolutions
Turning over a new leaf—great phrase in our society. People tend to make a resolution each New Year, me included. Years ago I decided that New Year resolutions didn't work for me or anyone else I knew. The first fever of motivation was easy; however, sticking with the goal day-after-day wasn't so easy. For myself, my inability to keep up the resolution simply brought feelings of failure. Perhaps this is because when we make a resolution we haven't truly explored what is behind the behavior or habit we would like to change.
For instance, I really like to write. Or perhaps it isn't writing I like as much as the sharing of concepts and ideas. I really like to explore what makes life work. I usually do my exploration in journaling because I can only really explore what makes my life work and then share my insights and understanding with other people. What I haven't been able to figure out is some of the reasons I haven't been able to sit down and discipline myself to write.
Blogging is a good example. Here I have this blog and I've written very little. I think it is because life has been rather…intense for the last year. The more stuff I have to cope with the more inclined I am to not write because who wants to hear about the downside of life? And that thought leads me to wonder how many people are feeling the same way. How many other people also withdraw because they don't want to share their sorrows. We don't seem to have problems sharing our joys, and let the hard times roll and most of us clam up.
I think I'll use this blog as a place to share whatever comes to mind on any given day. Perhaps if I am able to open up and share both the ups and downs, then other people will be encourage to explore their own ups and downs.
Thursday, July 1, 2010
I will follow me
I will follow me; follow me where ever I may be
There isn't an ocean too deep, a mountain so high it can keep,
Keep me away from me...
Okay, so I took a lot of poetic license here. My apologies to the original song writer. It says what I have been trying to say for weeks now.
I wondered many weeks ago how we lose ourselves. It was a question stimulated from watching Sister Act. I always cry when I watch Sister Act. I cried the first time I saw it and I still cry each time I see it. It remains, however, one of my favorite movies. I cry because somewhere along the path of growing up and the path of life, I feel like I lost myself. I cry because I don't know how that happened.
Mind you, I would not change one iota of my life. I am where I want to be and most of the times I am who I want to be. I believe that the tears come from not knowing how to pursue paths in my life that bring me joy each day. Music is one of them. Not music in a rock star, teen idol, stardom kind of way. I so am not up to singing on stage and strutting my stuff. It isn't who I am. I get stage fright so bad I want to throw up. I surely would have ended up a drug addict if I'd tried to go that path, which is one of the reasons my family dissuaded me from doing that. I guess they didn't know any other course to pursue either.
And that is neither here nor there. It does give some history and set up the subject of this blog for you.
Question: How do we lose ourselves?
Answer: No one teaches us to find ourselves in the first place.
Or let me qualify that by saying—in my experience, there are fewer people who find themselves than there are people who lose themselves. And as an addendum to that qualification—I've also found, in my experience, that most people don't know they are lost. They only know they are dissatisfied, unmotivated, and/or angry, and/or feeling guilty, and/or…the list can go on!
I have a friend whose son wants to grow up to ride dirt bikes and get national advertisers to pay him for it. You know, like race car drivers do. He thinks because of his goal in life, he doesn't need an education. My gut reaction to that was—OMG! He wants to WHAT? I suspect his mom's gut reaction was similar.
And then I got to thinking about my own child and how I would approach the same or similar situation. My kid had a bent toward art, poetry, photography and writing. My gut response to that was the same as my mom's and her partner's—you can't make a living that way.
After some thought, though, I realized that is not true. Many people make their livings that way. They may not be vaunted artists and poets and photographers; however, people make livings, good livings, through those skills every day. And they love their jobs. And they know who they are and where they are going and what it takes. They are able to make their joy become their job. What better way to live?
So instead my approach was research and learning. What skills does it take, who does it and who do you admire, how did they get to the position they are in.
I would do the same thing with a boy who wants to grow up and ride dirt bikes. I'd do it because I know my gut reaction is there because I was taught to think that way. If I look beyond my gut reaction, then I have to admit our society is populated with people who do things like ride dirt bikes for a living. Let's talk about football players, baseball players, race car drivers, musicians, writers, poets, movie stars.
Successful ones are few and far between, you say? I agree. When you look at them statistically on a national average, they are.
Those careers have a short life, you say? I agree. One can only get beat up so many times each day before the body don't like it no more. Or one can only play the leading lady so long before they become a mature woman. Or … you get the picture.
The skills they employ, however, are not few and far between and no matter how old you get, the sills are still valid.
Let's refine it down even further. Let's say Olympic Athletes. I cannot even begin to imagine what one does with ones life when they spend most of it for one moment, hoping to get a gold medal. Can you? Can you imagine being the parent of a Christi Yamaguchi? Can you imagine what would happen if her parents' had said—I don't think so! You can't make a living that way!
We would have missed so much beauty. And Christy Yamaguchi would have lost herself.
The trick is to be supportive and find alternatives and then watch them grow. The more you fight with your children, the further apart you withdraw from them.
I'm not suggesting my folks should have supported me in becoming a rock star. I am suggesting they might have supported me in learning about and experiencing the things that could lead to a dream. Help me learn who I am. Who I AM. Not who society says I SHOULD be, or how society says I should be SUCCESSFUL. Or even what society say is successful.
As parents, we can't predict our children's paths. We can't walk it for them. We can only give them the skills to figure it out for themselves. And I don't know if you parents have noticed this—the more you say "no, you can't", the more inclined they are to rebel. And pretty soon you get into the teen years and it is tug of war and you spend your nights wondering where you went wrong and if they are going to live beyond the ripe old age of 19.
So I go back to my little song up there. There is one thing all of us need to remember—not only about our children's lives, also about our own.
I will follow me.
I am my first relationship. I am my last relationship.
I don't care if mommy is looking down at me when I am born; I am still my first relationship. She is out there, I am in here. It is mommy's goal to teach me about myself and the world I live in and how to survive.
In the end, it is my goal to survive with joy. There are lots of words for it. To survive with my wants and needs met. To not sit back at age 50 and wonder where I lost myself.
We all have to work for a living. It is part of life. We spend the majority of our waking hours working. It is what we do. If we weren't working a job, we'd be out in the fields planting and harvesting food, chopping wood, etc. Or hunting and gathering. It is how we survive. It is how everything survives. One needs to eat and have shelter and have a safe place to be. Once survival of the body is accomplished, then we start looking for what makes us … what we are beyond survival.
Well, in this society we've got most of it knocked. We have time to explore and learn who we are beyond survival. Our children have the opportunity to become more than a hunter-gatherer.
At least for the most part. I shudder to think of all the people in our society who still must eek out bare survival. Just because I do not mention it here, does not mean I am not aware of it.
My message is this—relationships are what we do in life. We cannot avoid it. Our primary relationship in life is with ourselves. No matter how far you run or where you go or how many times you change careers, mates, houses, or cities—you will always come with you. You are the constant in a universe of change. You may constantly change and yet you are your constant.
Make friends with yourself.
And then as parents, help teach your children the same thing. Think beyond the box of our family and societal enculturation. Teach your children to think beyond that box.
Saturday, May 8, 2010
Walking the Talk
Have you ever had the feeling you were being tested by… I don't know—the Universe—you can use whatever word you relate to there. For me, Universe works. God might work for you.
Life, for me, has always seemed to be a series of tests. I formulate a belief system and then things happen to test my belief system. In other words, it is like Universe asks me to walk my talk.
You know, it is relatively easy to give "advice" to other people. I dislike the word advice, which is why I put it into quotes. I don't really give advice because whatever I write or say, I have no investment attached to it. I've found through the years that people who give "advice" are invested in you talking their advice, and if you don't take it, then they get all upset. That isn't where I am at with what I write. I just observe what happens in my life and share my experience with you. Perhaps in the sharing, you will make your own observations and come to your own conclusions and find a way that works in your life for you.
Walking the talk. It is easy to talk about the way one "should" go about doing something. It isn't always so easy to do what you have said, though. I'm sure we all can relate to that! Just look at how many parents, in frustration, start telling their kids—just do as I tell you. Mostly, I find this is because the parent is not doing what they are telling the child to do, and in the wisdom all children seem to bear, the child points it out and the parent cannot justify to their own selves why there are two standards.
Thursday I found myself in a situation that totally threw me into emotional turmoil. I had an interviewing skills workshop with the Employment Development Department (EDD). I thought I'd go to this workshop and maybe they could help me translate my skills and experiences into words that the employer understands. Sounded like a great plan to me.
They started out their workshop with a quote from Steve Martin—"Be so good they can't ignore you."
I read that and thought, strike one. I am good at what I do, and there are some people in this world who simply shine in certain places. For instance, Steve Martin, is considered to be excellent at what he does. He has been so good, in fact, that no one ignored him. I guess he's just that kind of person with that kind of drive and confidence. He is doing what he loves and it shines through. Good for him!
On the whole, however, I feel a quote like that is meaningless drivel to most of us who find ourselves attending an interviewing skills workshop. It could just be me, and somehow it sets most of us up for failure. We cannot all be Steve Martin. Or, perhaps we could if we were pursuing what we truly wanted in life. That's a thought….
Strike two came at telling us employers were looking to "rule you out" not "rule you in". I totally believe that. When you are faced with hundreds of applicants, ruling out would be the way to proceed because there aren't enough known factors to start "ruling in" until you have leveled the playing field. My feeling at that point was—I don't know if I'm up to that. I don't know if I have that much enthusiasm for whatever I'm interviewing for to shine brighter than anyone else.
Let me say that while all these thoughts are flitting through my head, I am asking questions. As an example, I asked them, "Am I hearing you correctly when you say the interviewers are there to rule you out? That in essence, they are not there to give you the opportunity, they just want to get you in and out and get on to the next person?" They stuttered and stammered (both of them being from long time positions of interviewing people for jobs) and finally admitted this was pretty much the case.
I am nothing if I am not direct. I don't remember when I got to be so disruptive during these things. When I was a child I was very shy and didn't say much. Then I grew up and got pissed off, I guess. <LMAO> after an hour had gone by I could tell they'd just as soon not see me raise my hand…
Strike three was about letters of recommendation. There were many things they said we needed to do or not do and each thing was like a weight on my heart. There was this voice inside me that kept saying—I can't be that. I am not that. I don't WANT to be that! The letters of recommendation broke my camel's back, though.
We are to setup this portfolio with all sorts of things in it so we have them when we need them. You know, resume, references both professional and personal, master job application, our gold stars, halos and angel wings, along with our letters of recommendation. Letters of recommendation are defined as originals on company letterhead that you have received within the last year or maybe two, but that seems to be stretching it.
Hand goes up, "what if you don't have letters of recommendation on company letterhead from the last year or two?"
Answer—Well, you can hopefully go back and get letters from your employers.
"What if you haven't worked in the last year or two?" (I have but I'm curious as to what they recommend)
Answer—Use volunteer jobs. Contact them and get letters. Volunteer jobs are really wonderful.
"What if you haven't had any volunteer job?"
Answer after a pause—Go out and get one now! Two or three ladies in the workshop nod—oh yes! You should go right out and get a volunteer job today. They are wonderful for references and you never can tell ….
"All good and I agree and … how will that get me a letter of recommendation for tomorrow?"
The upshot was Teri finally saying, holding back tears because when I get angry I cry, "I do not feel that I am being heard or understood here. I need help getting a job and telling me to go out and get a volunteer job today so I can have a letter of recommendation is not going to put food on the table tomorrow."
To say the least, at the break I picked up my stuff and went home. EDD had nothing for me. And yet, they gave me a lot to contemplate.
I cannot be what "they" want me to be. If I do not believe what I am telling you, then you—the employer—are not going to believe what I'm telling you either. And yes, during the 2 hours I was at that workshop I pointed that very fact out to the workshop teachers.
The truth is—I don't even want to be what "they" want me to be. I only want to be who I am.
And who I am has value.
Who I am and what I am capable of—where I shine so brightly "they" cannot ignore me—may not put food on the table or pay the bills, and yet this is who I am and I find nothing to be ashamed of.
So how will I be walking my talk? The next interview I get I will be who I am. If they don't find who I am to be valuable to their organization that is their loss, and truthfully, I wouldn't want to work for them anyway. I don't work well with people who value resumes, three piece suits and letters of recommendations over the person sitting in front of them.
Don't let "them" brainwash you. Be who you are and take pride in who you are. You are the only you there is, and while it is very scary to contemplate not being able to eat or pay bills or file bankruptcy or….any of the multitude of things we get ourselves all worked up about and scared of—to live always feeling like you don't make the muster is not living.
Saturday, May 1, 2010
Each year I sit down and look at my life and celebrate. I review and see if there are things I would change about my life. I’m a huge believer in change. I may not be able to change how I look or change where I live or change what I have experienced over the last 53 years, yet all those things are part and parcel of who I Am. I don’t have much control over physical stuff and sometimes you live in a particular place because it is the best option available at the moment, and what you have experienced is done and in past.
What I can change is how I feel about my experiences, or my physical body, or my neighborhood. I have control over my perceptions. My teacher always said—change yourself on the inside and the outside will change to accommodate you. In all the years since I began to understand what she said and practice the philosophy, I haven’t found her wrong. I say it a bit differently and I stole it from Dr. Phil (I hear the groans…)
Bloom where you’re planted.
Every year I come up with the same answer to my question “are there things I would change about my life”. The answer is no. What I have experienced has lead me to this place in time, and I would not miss this moment for anything.