Does your MS create constraint or motivation?

Many years back, I thought to myself: If I ever have trouble walking, I'll do everything I possibly can to get better. I remember that I was watching some people who were having difficulty walking, and that I was being very judgmental of them.

Flash forward to today, when I now find myself with mobility issues, I think back to that moment. And I wonder if I'm now doing everything that I can to make sure that I can still walk. The answer is a resounding "No".  In some ways, this is very useful because it allows me to continue to play out my old dynamic. I get to judge and berate myself, and then tell myself the lie that health has nothing to do with effort - it's just something we are born with (or in my case, without).

I was going through this internal dialogue yesterday and realized that it's another variant of how I praise myself. I've written here about the work of Carol Dweck before, and I think it applies here. There are two types of praise, one for process and one for a trait. Process based praise is praising for effort and the work that it took to do something. Trait based praise is praising for a trait the person possesses such as "you must be really smart" or "you're very talented". Trait based praise is static - it's a fixed thing within us that we have no control over, so trait based praise tends to de-motivate people. Process based praise is dynamic and reflects a  person's actions and efforts. It is very motivating because a person knows that to receive more praise, they just need to do the thing they are being praised for: effort. I've never figured out how to be more "smart" but I think I can work harder.

Likewise, is MS a trait or a process? Is it a fact of our being or directly influenced by our actions?

One thing that always amazes me about the Human body is how quickly it responds to usage and need. All of our muscles and bones change and grow in response to how we use them. Martial artists hit hard surfaces repeatedly so their bones get stronger. Astronauts lose bone density almost immediately when in space because their is no longer any gravity for their bones to harden against.

New research is showing that the brain and nervous system respond similarly. The brain is really just a muscle that needs exercise, and then responds to need. MS damages the brain and nerves, and the body rebuilds them. A lot of my thinking on MS thus far has been on what type of beliefs and thoughts help the brain to damage itself. The next step is figuring out what kind of thoughts and activities help to build the brain.

My initial approach is that any new way I use my body or mind is probably going to help the brain. I recently started lifting weights and one thing that my mentor emphasized was not to get into a routine. He recommended that I vary weight, reps, speed, and exercises every two weeks. The body needs constant change to continue to grow. I have to continually look for new ways of moving my body so my brain is forced to grow and change in response to the movement. But it take a long time to build nerves and brain tissue. Muscles change the quickest. Then tendons, then bones, and then finally nerves. This is one place where praise for the effort is everything because the results take a long time to come.

When I started to work out four months ago, I would almost always hit a point where the muscles involved in the exercise would just stop working. They weren't tired, but it was like the off switch had been hit and they stopped responding. It was a distinct sensation from when the muscle got fatigued and was unable to lift more, and it was definitely neurological in origin. When I worked out yesterday, that sensation only happened 40% of the time, and mostly, I could feel the muscle get tired. My brain must have grown some new pathways!

If MS is viewed as a trait, as a fixed disease within us, then it constrains us. It limits our actions and there is nothing we can do about it. If MS is a dynamic process, then it can motivate us and help us to work harder and put more effort into being healthy. MS needs to be our motivation, not our limitation.

photo courtesy of Brain_Blogger

Involving Children in MS

As part of my recent move back to the US, we stayed with my parents for two months and I picked up a wonderful idea for involving kids with my MS medicine.

My father is diabetic and checks his blood sugar before every meal. My children followed him up to his room during the first week we were there and started asking him all sorts of questions about how the procedure. Soon after, I realized that they were going up to his room every time he was checking his blood sugar and getting angry if he didn't include them in it. He had divided up the tasks involved between my two girls and involved them in it. When my nephew came to visit, they eagerly brought him up with them to show him how Grandpa was "doing his numbers".

I quickly adapted this excellent idea for myself. I was used to taking my Copaxone when the kids were at school, so I shifted it to before school. Every morning, one child unscrews the autoject and one tears open the alcohol pad. On opens the package to the needle (still well capped), and I insert it into the autoject. They watch the indicator to see when it's done, then hand me a cotton ball. One gets to throw the capped needle into sharps container and the other throws out the trash. The love it.

The kids know that the medicine helps to keep me healthy, and they love being able to help me out with it. It's an easy way to demystify the whole process, give them a sense of ownership over it, and keep the discussion of MS open within the household. Plus it's a fun thing we can all do together!

Self-Pity

A barrier to spiritual development I've been encountering in myself and have seen in others is Self-pity. It's the attitude of a person that there is something so wrong with themselves that it excuses their behavior. It's the woe-is-me attitude that prevents a person from growing.

For some, it's the one-upmanship of illness and disability: The "oh yeah, well you don't know pain like I know pain" type of attitude, but it's not said as a toughness thing, but rather as a boast of how pathetic one is.

For some, it's a stumbling block: "I can't ever do that because I'm too sick to." This is not the honest acknowledgment of ability, but the self-imposition of limitation.

For some, it's a barrier to relationship: "You can't understand me because you don't know what it's like to [fill in blank with symptom]." This is the withdrawal from a relationship by assuming a person won't understand and thereby not sharing and communicating and giving the person a chance to understand. It's a form of contempt for another where one assumes that they are better than the other and thereby stop taking the other seriously.

My approach to self-pity follows two paths. The first is awareness. When I realize I'm doing it, I can stop. I listen to my inner voice and when I hear myself saying things that reflect self-pity, I pay attention to how I'm feeling. I can then know to look for the words or the feelings to identify the self-pity. Sometimes this alone is enough to head it off.

The second approach is to make fun of myself for it: "oh, poor, poor me. There is no one more pathetic than me." I reinforce and accentuate the feeling. By putting energy into it, I react more strongly to it and work it through. Sometimes I get really silly in making fun of myself. The internal laughter transforms the darkness of the self-pity and helps me to see how little I like myself when the self-pity is in control, and I start to change.

Self-pity is a cycle that builds and spins on itself. It's like a whirlpool that carries one around and around without allowing motion anywhere but down. The longer one is stuck in it, the more powerful it becomes.

What are your tricks for breaking out of self-pity?


photo courtesy of DOH4

Mislabeling emtions

In reading Stumbling on Happiness, I found several ideas that I think are relevant to MS.

On page 63, he writes that mislabeling emotions is a very common and easy thing to do.

When I think back on my own experience, I spent many years lost in fear without even being aware that I was scared. It took a very perceptive person to point out to me that I was frightened before I could even begin to perceive it. When I first became aware of it, I didn't even feel scared, but instead I just felt a vibration in my guts and my body would shake.

It then took years to be able to actually feel scared and properly identify the emotion. Even now, I sometimes only know I'm scared because I see that I'm reacting poorly to things and realize that my fear must be taking control. I have to sit and meditate to be able to relax enough to feel the fear, which allows me to move beyond it.

I wonder if there are commonalities among people with MS and if we commonly mislabel the same emotions? This could help lead us to the patterns of thought that lead to the disease.

Has anyone noticed any patterns of mislabeled emotions in their own lives?

Review: Stumbling on Happiness

I recently read a book call Stumbling on Happiness by Daniel Todd Gilbert (click on image above for a link to the book) and it stimulated some thoughts on MS. This post is a quick summary of the book, and the next few posts will be a few ideas that I think are relevant to MS.

The basic premise of the book is that we often mis-remember important emotions and events, and so when we envision our future to make choices, we make those choices on faulty information. There are two main problems with memory. The first is that we remember only a small part of our actual experience, so when we project into the future, we have to fill in the gaps with our imagination. The second is that we tend to retell painful stories in ways that make them less painful, so we don't actually remember how we felt during traumatic events.

The problem with our imagination is that it bases our projected future upon our present state of being, or on our poor memories of the past, both of which end up being badly flawed guesses as to what life will be like in our futures. This leads to problems in making choices about our future, especially, he writes, when it comes to happiness. We get stuck repeating bad choices and failing to move forward with our lives.

His conclusion is that we should make our future choices based on what we hear from other people who are doing, right now, what we are thinking about doing in the future. For instance, if I am thinking about seeing a movie, I shouldn't ask someone who saw it last week, I should go to the theater and ask people immediately as they walk out of the movie I'm thinking of seeing. He recommends doing something like that for pretty much all of our important decisions.

I enjoyed the book, but I didn't much care for his sense of humor. I felt like I was trapped at dinner with a distant relative who made jokes every third sentence whether they were funny or not, but what he said was interesting enough to make me overlook it. I also disagree with his conclusion that though we all want to think of ourselves as unique, we are all very similar. As I've gotten older, I've realized more and more how different people are.

Overall, I think that there are a lot of good thoughts in the book, and he does a good job of presenting a wide range of psychological research in a very accessible form.

Thinking yourself to health

In my last post, I wrote about a recent article on how brains change and grow in response to how and what we think. In many ways, this should come as no surprise. Our muscles and bones also grow in response to use. When we lift weights, we gain more muscle. When we put more stress on our bones, they get stronger. Martial artists have a long practice of training by hitting walls or sand repeatedly. Each impact signals the body to grow stronger bones and tougher skin. Heel spurs are the result of impacts on the heel when we walk which results in dysfunctional and painful bone growth. Same process with two very different results.

MS is an auto-immune disease which means we cause it ourselves. Given what we know about bone and muscle growth, the question arises if there is something in our own actions that causes the dysfunction in our immune systems? Given what the recent study revealed about brains following the same pattern but in response to the way we think, are there patterns of thought which lead to a worsening or improvement in our MS? Do these patterns of thought cause physical changes in the brain that alter our symptoms? And if they do, how does one change those patterns of thought to lead to a healthier brain?

My approach is that the dysfunctional patterns of thought revolve around self-hate, fear, and giving away power. I would also add a lack of connection to self and to God. Over time, they pull the brain in the wrong direction and encourage a dysfunctional immune system.

One thing that the article really stressed was that the changes in the brain take years to occur. Cognitive  reserve, their term for mental strength, is developed over a lifetime. The article also stated that mental strengthening is the result of continual effort and focus – finding challenges and raising a mental sweat in overcoming them. This means that any changes in the course of our MS from this approach take a long period of concerted effort to show any results. Simplified, this all means to have patience with yourself.

What do you think? Are there patterns of your thinking that lead you to get healthier or sicker?

Photo courtesy of LuMaxArt

Flexing your Brain

The lead article in the fall 2009 issue of the Rocky Mountain MS society's magazine InforMS is about changes in the brains of London cab drivers while they learn their craft. In this blog post, I will summarize the article and the conclusions it draws based on this research. In my next post, I will propose another direction the research can take us and how that might help people with MS.

Studies show that as new drivers go through an intensive three year training program to memorize all streets, attractions, and restaurants in central London, the parts of their brains thought to be connected to navigation got bigger and bigger. The study shows that our brains continue to change and develop over time in response to what we do and think. The article states:

“This research on the cab drivers adds to our growing understanding that our brains are sculpted by what we learn and experience throughout our lifetime. We know that our brains influence what we do with our lives. Now we are beginning to appreciate the converse: what we do with our lives influences our brains.” (p. 3)

The article continues that our brains ability to grow and change is called “Cognitive reserve”. Which is defined as "...a measure of brain fitness and flexibility. Like muscles, brains become more flexible if they are regularly challenged.” (p. 4) Brains with lots of cognitive reserve have an easier time repairing themselves.

The article continues to talk about ways to improve one's cognitive reserve, of which the best ways are physical and mental exercise. Physical exercise improves blood flow to the brain and reduces stress. As for mental exercise, the article states that “Apparently, what really stimulates the brain to learn and grow is more a function of how, and how much you are challenged to learn, not what you learn. “ (p. 5) As with physical exercise, the amount of benefit you receive is directly related to the amount of effort you expend. If you focus on a mental challenge, you will build mental muscle.

The Rocky Mountain MS society does wonderful work and also does a lot of work with examining how complimentary and alternative medicine can help people with MS – something near and dear to my heart. I recommend checking out their website and subscribing to their newsletters and quarterly magazine. As an addendum to this post, I would recommend checking out the bibliography on the brain Article as well.

Fizz to Solidity: A technique for feeling the world

I was lying in bed the other night waiting to fall asleep when I starting paying attention to my sensations. Along my back and torso, I could feel the bed as a solid object, pressing into me. But along my legs and feet, it felt like wind. Instead of feeling the solidity of the bed, I felt like my legs were resting on a the top of the foam that bubbles to the top of a freshly poured soda.

I knew that this type of diffuse sensation is not uncommon with MS, so I didn't try to do anything about it. But it was an interesting sensation, so I focused on it without moving my legs or trying to change it in any way. That's when it got really interesting. A few minutes later the sensation changed from fizz to concrete reality. Instead of the foam sensation, I felt the bed solidly underneath me pushing back on the weight of my body lying there.

I didn't think much of it and went to sleep. The next night, I tried it again. No intent to change, no desire to actually do anything other than pay attention to the actual sensation my legs were giving me. Again I felt the fizz and again it changed to solidity, but quicker than the first time. I did that for a few days and three nights ago, when I lay down, I only felt solidity, no fizz at all.

Since that first night, I've been paying a lot of attention to what I am actually feeling. When I sit, I focus on my legs and butt meeting the chair. When I stand, it's my feet on the ground. I've had intermittent dulled sensation in my feet for years, so it's been really interesting to pay attention to what I feel and watch the sensation come and go. Though again, the more I pay attention to it, the more it turns into solidity and less fizzy.

For a number of years, I saw an Alexander Technique teacher in Boston by the name of Debi Adams, who I strongly recommend to anyone in that area. I had to stop the lessons when I moved to Israel three years ago, and the bodily awareness that came from them  faded over the course of a year or two. But when I started to pay attention to the
sensations, then lessons instantly came back and with them a body awareness I hadn't realized was so dulled. (On my healing blog I wrote about a class I took with Tommy Thompson, a master teacher of the Alexander Technique).

The trick seems to be to pay attention to two things: the actual sensation coming from my body and the fact that the thing I'm touching is pushing back on me. When I step on the ground, I'm pushing down, but the ground is pushing back up. When I lie on the bed, gravity is pushing me down and the bed is pushing me up. Focusing on the contact point between the two is where all the good stuff happens. If I focus too much on myself, then I ignore the world around. But if I focus too much outside, then I miss myself.

The other trick is not to try to change anything, but just to pay attention and let the change come. Part of MS is a disconnect between what's outside and our perceptions of it. This technique brings those two into clearer harmony.

I don't know if the technique helps repair the damaged nerves or builds new neurological connections, but one way or another, it helps.

I'm wondering what types of experiences others have had when focusing on their sensations and if it helped them to heal? Please comment and let me know.

MS as teacher

Last week, I had a lovely lunch with Shulamit Lando, a psychotherapist and personal life coach who has had MS for the past 20 years (check out her website for some good info).  One of the most interesting things she said to me was that one of her primary focuses in working with people coping with MS and other diseases is to help them shift their perspective to realize that the disease is teaching them something and they need to learn from it rather than fighting it. Once they do that, they can begin to really change and embrace who they are now instead of fighting to hold on to who they were before they got sick.

I thought her approach was a good one, so came to the blog to write about it and found that I'd already started the post before I met with her!

In the middle of January, I had written:
Someone asked me recently how I relate to my MS. My response was that I view MS as my teacher, albeit one with awful pedagogical methods, but a teacher none the less. In every episode or symptom is the potential to learn about myself. Every aspect of MS is trying to teach me a lesson, and it's just up to me to figure out what it is. I don't know if the MS will go away when I've learned the lesson, but I know that I am much happier and centered.


MS is the motivation to move me forward in my spiritual development. I think that if I didn't have MS, I would still be working at Kinko's trying to figure out how to be a business person and not really understanding why I wasn't succeeding. With MS, I've become a healer and am really able to make a difference in people's lives.

I wrote it, saved it to be edited, and forgot about it.

It's funny how the world works sometimes. I can't figure out if God was trying to give me a clear message or if I was just in tune with the flow of energy in the Universe. In either case, it's helpful to figure out how MS can be your teacher.

I'm curious if other people view MS this way and what are the lessons they feel MS has taught them?

Praise your part in your MS

Photo (c) Aaron Askanase (yes, this is my daughter!)

I think there are many lessons to be learned from the work of Carol Dweck, a professor of Social psychology at Stanford. Her work on the effects of praise on children have influenced my thinking (and my parenting).

She divides praise (and criticism) into two categories: person/trait praise and process praise. In person praise, the child is praised for a trait such as, "wow, you did the puzzle, you must be very smart!". In process praise, the child is praised for their effort, "wow, you worked really hard to finish that puzzle!". What she found is that children who receive process based praise were more likely to work harder, seek greater challenges, and overcome adversity better. The children who received trait based praise became more easily frustrated, and were more likely to seek simpler challenges in which they could succeed more easily.

In my opinion, the most important part is that the kids who were praised for something within their control worked harder. When I praise my daughter for effort, she knows that to succeed she just needs to work harder. If I praise her for being smart, she has no idea how to be smarter. In fact, there is no way to be smarter, so I haven't given her any tools or hints on how to succeed. Dweck points out that children who are praised for being smart (or any trait) often feel dumb if they fail at a task. The trait based praise leads kids into a dead-end: they are judging themselves on a standard over which they have no control.

These standards can be used for how we describe MS. It can either be a trait, something that is fixed, over which we have no power. Or it can be a process, one in which we have a great deal of influence.

It's very important to conceptualize MS in a way that includes our own influence on the course of the disease. I often think of MS as a condition of my life. It's not a disease that is afflicting me, but rather an aspect of who I am. Just like I wear glasses, I have MS. For my bad eyesight, I know that I can wear glasses or do eye exercises to help me improve. For my MS, I know that there are things I can do to make it worse and things to make it better. And those things are firmly in my control.

When I evaluate my MS, I don't measure it according to how many times I felt symptoms or how bad they were. Rather, I measure it according to what I did to effect the condition: did I do my exercises? Did I eat right? Did I take my drugs? Did I sleep enough? Have I meditated? I know that all of those things are in my power, so that's what I focus on. I know that there will be setbacks or problems with my body, but if I look at MS in a process way, I will always be able to find a way to continue doing everything in my power to make myself healthy.

The hardest question

Photo courtesy of thehoneybunny

Last night I found my wife's chocolate stash and decided to help myself to a piece. I knew it wasn't good for me, but after thinking about it for a moment I took a piece anyway. As if to prove a point, I got an instant headache.

What struck me was the thought process: I know this is bad for me and I'm going to do it anyway. I've written before about the urge to self-destruction, but this was a totally different energy. I wasn't doing something unconsciously or without realizing it was bad for me, I was choosing it intentionally. Why would I do that?

It led me to the hardest question: do I want to be sick? Is there some benefit to myself that makes me choose to be sick?

My daughter looked up at me the other day (when she was home sick from Kindergarten) and said: "Being sick is fun, I get to stay home with mommy and daddy, draw all day, and play on the computer." I stared at her for a moment before I said anything. I started looking back at my life and remembering the many times when I had the same reaction. Now I have to start looking at my life now and seeing if I am having that same reaction.

And then I have to ask myself the hardest question of all: do I enjoy being sick? And if the answer is "yes" than I know what my next stage of spiritual growth has to be.

Surrender and Progress

Picture by Aaron Askanase

I was recently contacted by someone who was newly diagnosed with MS. Her main question to me was if her anger at the diagnosis would pass. I reassured her that it would, but let her know that we all have to find our own peace with the condition.

It got me thinking in two directions. The first is that I firmly believe that anger is best dealt with by dealing with fear. Fear causes the fight or flight reaction and the extra energy easily turns into anger. A new diagnosis is very scary. It puts the future into very uncertain terms, some of which can be very debilitating. My advice as a healer is always to look at what scares someone about the potential futures and spend time with the fear.

My second reaction was realizing that I'm not sure that I went through a long period of anger about the diagnosis. I was 26 when I got diagnosed and really had no understanding of MS at all. I didn't even know I should be scared of it, so I just rolled with it. I had no idea how it might effect my life, so wasn't sure how to react to it. There are times that I get angry about it, but they pass relatively quickly.

I was talking to my wife about this, and she was remembering her anger at blowing out her knees while training for a marathon years ago. She was so angry that she was not going to be able to run the marathon, and angry that she couldn't really walk for about three months.  My wife is a very goal oriented person with a high drive to succeed. I'm not. When the MS limits me, I just find something else to do. When she gets stymied, the energy just builds up until she finds another way to succeed or she gets really angry.

For me, having MS meant that because of the heat, I couldn't go to the rain forest in Peru on my honeymoon (something I'd always wanted to do). I thought it would have been amazing to go, but we just found other places to go, no big deal. For a very goal oriented person, I would think that would have been very frustrating.

It's hard for me to determine when I started to be this way, but my life is a careful balance of surrender and progress. I work very hard on myself to heal and to be a good healer, but when things change for me then I surrender to the change and adjust. I have an innate faith in God, but I don't know if that is a result of the MS or if it was just accentuated by it. I learned very early on that there were things in this world that were more powerful than I was, and that I just needed to surrender to those things. The difficulty is knowing which things should be struggled against, and which things should be accepted.

I think it's like a stream coming towards me. If I fight it, it builds up and overwhelms me (and even a small stream can do this if allowed to). If I completely surrender, then I get washed away. But if I accept the force coming towards me and change with it's influence, then I can stand in the stream and maintain myself.

I think the anger about MS is that resistance to the change. MS is so much bigger than we are, but we have so much influence over how it effects us and how we react to it. Dealing with the anger is a question of learning to live with those changes, and learning to be at peace with the uncertainty MS brings.

I'd like to hear from you about how you've dealt with your anger, and what you've found most effective.

The Bad Food Cycle

Photo by Chotda

I am an acupuncturist. Part of my training and my work with people involves dietary advise, so I've learned a lot about food from both a western and Chinese perspective. But I'm not sure it's helped me that much. I have a pretty good idea which foods are good to eat and which are bad for me based on the theory I've learned, and on watching my body's reactions to what I put in my mouth as I'm very reactive to what I eat. If I have a bowl of soy ice cream (unfortunately, I haven't had the real stuff in years), by the time I'm finished my nose will be stuffy. But I often get in a very bad food cycle.

I've never been much good at cooking for myself. I'm actually a fairly decent cook, but I can never think of what to make. My wife has the gift of looking at a recipe and knowing exactly how it will taste. I look at a recipe, even for things I've cooked many times, and it always looks like a list of ingredients to me. I can look at a fridge full of vegetables and have no idea what to cook. So all too often, I'll make pasta because it's easy and known. Or I'll pull out some instant food from the freezer which really isn't good for me.

To put this cycle in energetic terms: food nourishes me and I'm not very good at nourishing myself. I'm much better at forgetting to eat or just eating junk, which then makes me feel poorly, and it makes me crave more junk.

It's the sugar cycle: when you eat good food, you crave what's needed for your body. When you eat sugar, you crave more sugar. Sugar destroys the body's ability to know what foods to eat because it overwhelms all other cravings.

When I'm losing myself in the self-hate, I eat badly and don't nourish myself with good food. Then the bad food wipes out my cravings for good foods and leaves only cravings for more junk. So I eat more junk, which reinforces the negative cycle. And so on into more self-destruction. At that point, I can start beating myself up for not eating well, so I can do the self-hate on another level as well because I know so much about food I really know how badly I'm eating.

So how to break the cycle? It's not easy. The first step is to be aware of it. That the food choices I make are rooted in the self-hate, not in self-nourishment. At that point, it's identifying the foods that create the downward spiral. Decreasing sugar intake, and eliminating it if possible.

And from then on, it's mostly a question of will. Can I get myself to make one good meal or try to get myself to eat one or two good foods. Often, I have to force myself to eat a good food just to try to get in the habit.

Eating is something we do all the time, so it's a good way to know how we are treating ourselves. It's also a great way to feel guilty all the time and beat ourselves up for how we eat. I don't advocate the guilt. Nor do I recommend getting comfortable with terrible food choices. But like all things, this is an opportunity to negotiate with our self-hate and try to learn to nourish ourselves both physically and spiritually.

Photo by Wespionage

On fears for the future

I received a letter today from someone who was asking me about the possibility that taking Copaxone can help reverse existing damage and prevent new damage. I am posting my response because I think these questions are something we all face:

My read on your questions is that you are scared about the possibility of long term disabilities and are wondering if copaxone helps to clear up old damage. Is that a correct read? My answer is many layered and not an easy one.

Over the past 20 years of having MS, I've had to learn to live with the fear that today might be the last day I walk. I could wake up in the morning and find that my legs no longer work. Or the fear that whatever transient thing I am feeling today may be with me for the rest of my life.

Copaxone is a negative drug, like all MS drugs: if nothing happens then it's working. But, at the same time, nothing might be happening in any case so the drug might be having no effect, so there is no way to really know. I hate to say it, but these are the fears and the uncertainties that the condition brings. I could tell you different, but it wouldn't be true.

I spend a lot of time working on my fears, as I'm a person who was completely lost in fear for much of my life. Knowing that these fears are real means that I am aware of them and then they don't have control over me. I suspect that another person (who I have yet to meet) would use these fears to take every moment as special knowing that tomorrow everything might change.

For me, I use the fears to help propel me forward on my person growth. I know that my spirit is very tied up with MS, so I try to use it as a tool to give me clues as to the growth I need to do. But I suspect everyone forms a different relationship with the fear.

I recommend not trying to get to any point, but spend time with the fear and then see what relationship develops, just making sure that the fear is acknowledged without letting it take control.

How to explain MS to children

I have two children and have had to think a lot about how to approach the topic of MS with them, so I thought I'd share how I approach the issue. One caveat is that I treat each discussion with them as unique and don't assume that what I thought they understood the talk before is how they understand it now. They are growing and their minds are developing, and I have to respect that their perspective changes all the time. So what I can share is my approach to the discussion, not the discussion itself.

The first thing to keep in mind is that kids are really, really sensitive. No matter what you say to them, they will hear your emotions underneath. If you are scared of your MS, they will be scared of MS. If you are scared to talk to them about it, they will think MS is scary. So work on yourself first. If you've been diagnosed, don't wait until you are in the middle of an episode to bring it up. Look for opportunities to bring it up. For me, my kids see me take my shot every morning, so we talk about it then. Which brings me to my next point:

Make it a regular topic of conversation in the house. Kids will figure out that MS is something shameful if it's always talked about in whispers and behind doors. They'll hear the word "MS" and think it's a dirty family secret. If it's something you talk about with them around, it gives them a chance to ask their questions and know it's just a fact of life, not something they have to feel bad about or be scared of.

My mother, Dr. Phyllis Silverman, is an expert in bereavement. One of her specialties is how children deal with the loss of a parent. I grew up in a house where death was talked about freely. When an older friend of mine died of leukemia when I was five, I went to the funeral and was part of the discussion about death. I wasn't scarred by the experience, but grew from it. There was nothing hidden from me. Dr. Silverman has written an excellent book entitled Never Too Young To Know about children and grief, which I highly recommend (and not just because she's my mom). When things are in the open, they are much less scary, and kids can feel free to ask questions about them.

My children have an amazing ability to make things up. I worry that they will make things up about MS if they only know part of the story, so I try to keep them in the loop. I think it's important to answer the question the child is actually asking. Often, my kids will ask things that seem to have a much greater meaning, but are actually much simpler.

I had an episode last year when my leg went numb and weak. I explained to my daughter that my leg was sick with MS. She asked me if I would be able to go out to the playground with her again. My reaction was one of fear that maybe I wouldn't and I wanted to explain to her about the unpredictability of MS. Then I stopped myself, and asked her what she meant by "again"? She said that she'd went this morning and wanted to go again, could I go with her? Not today I said, and she walked away content, though disappointed. I had answered her question, not what I thought she'd meant.

I also look for how MS effects their lives. When I take my shot every morning, my kids think nothing of it because they got their shots too, and they know that we both take shots so we don't get sick. I put it into their language, spoken to the questions they have, so their understanding of the disease can grow as they do.

I think that the only secret: talk to your kids. Give them room to ask their questions and then actually answer them. Keep your emotions neutral so your kid can have their own reaction without being influenced by your emotions. I make use of "Emotional Coaching" techniques to help them deal with their emotions. Kids are incredibly strong, and have a resilience which is completely amazing. Don't sell them short.

I didn't have kids when I was first diagnosed, but I think this must be a much harder discussion to have if you've been diagnosed and are in the middle of your first episode when you already have kids. My advice would be to give yourself space to deal with yourself, while give your kids space to digest the change.

My basic advice: just talk. The more you talk, the easier it will get to say things, and the easier it will be for the children's understanding of MS to change and grow as they do. I've seen my understanding and relationship to my MS grows and change too, so my kids need to be in the conversation so we can all grow together, not apart.

This is what's worked for me. What's worked for you?

August 16, 2012 - a quick post-script
One of the lessons I've had to learn as an adult, and have tried to teach my children is that things take practice. We never gets things right the first time, and rarely get them right on the 20th time either. My kids know that if you want to get good at something, you need to practice. It's true about talking to kids about MS, it takes practice. Don't assume that you can do it once and be done with it, or that it will go easily or well the first time. But the more you do it, the easier and better it becomes.

Fear is the mother of anger

In Chinese medicine, health is achieved through the balancing of the five elements. Each element has an associated internal organ and emotion. In the generation cycle, water is the mother of wood, meaning that water energy creates wood energy. The emotions that are associated with them are fear (water) and anger (wood). Fear creates anger.

In the western world, we refer to this as fight or flight. When we are scared, our instinctual reaction is either to run or to turn and fight. In Chinese medicine, the wood energy is understood to be forceful directed energy, much like a punch. We get scared, we want to hit something. My experience with MS is that the wood energy often gets directed back at oneself, so essentially when we get scared, we hit and hurt ourselves. It's a very ineffectual way of running away. It's also another aspect of the urge for self-destruction.

The key to unraveling this cycle is to deal with our fear directly. There are many ways to do that which I will write about in my next post, but the best way is to send love to the fear. In the five element cycle, fire is the child of wood. Fire is associated with the heart and with love, so when we transform our anger into love we are bringing ourselves back into balance. More on this in the next post.

This post has a lot of Chinese medical jargon in it. I chose to use it, though I usually stay away from jargon if possible, because it's the best way to express what I wanted to convey, so if you have questions about the jargon, please let me know.

Anger takes away power

I've been noticing lately how effective anger is in taking away my power.

I'm the kind of person who is very sensitive to noises around me, so when my neighbors play their stereo too loud or let their yappy dogs yap at one am, it just makes me really angry. So much so that I either just sit and stew, which is no good for me, or I knock on their door to "talk" to them about it. When I'm angry, I'm very aggressive and I just want to shout at them. Invariably, that just results in their shouting back at me, and the music stays loud. When I go talk to my neighbor in a calm voice, she'll usually listen attentively and turn it down. Invariably, when I'm angry, I yell and nothing gets done.

The anger saps my power and then I make choices to please the anger, not to help myself, and those choices are always the wrong ones. By allowing the anger to have power over me, I lose my power.

There are those who are fueled by anger. I hear stories about football players who play their best games when they are really pissed off. They have figured out, or maybe their just wired that way, to use the power generated from anger to help themselves.

I don't know if I can generalize for all people with MS, but anger has never taken me to a good place, it's only taken me to more darkness. My choice is either to learn how to decrease my anger, which involves dealing with my fears (more about this later), or learn to channel the anger for my good.

I guess that's the question for y'all: does anger motivate you to help or harm yourself? Does it focus you? Or send you off in the wrong directions?

Giving away power

I always try to look inside myself for the things that seem to have the most power in my MS and then try to change those. There are three that always lead me to bad places: fear, my inclination to self-destruction, and giving away my power. Today I'll write about giving away power.

Giving away power is when we assume that we are incapable of doing something and then prove it by our own actions. Another way of describing it is when we shoot ourselves in the foot.

An example: I went to meet one of my study partners last night and within the first ten minutes, I apologized for lacking focus as it had been a long day. Now, I felt like I was a little scattered and was having trouble focusing, but I have no idea what his perception was. He hadn't mentioned it or said anything, and for all I know, he thought I was very focused and just following out trains of thoughts. But once I say that I'm lacking focus, he's going to look at me for the rest of the night and think that I'm not focusing. I've made him think something about me which is only a reflection of how I'm thinking about myself, but may or may not reflect reality.

There have been numerous educational studies that find that a teacher's expectations and assumptions about a student play a major role in the success or failure of that student. I think this is true of all of our interactions. If we assume someone is ignorant, or we expect that they don't know what they are talking about, then even if they give us the correct answers, it's very hard for us to hear.

Giving away power is all about shaping someone else's assumptions about us to think worse about us. Why we would do this is a whole different discussion, but becoming aware of it is incredibly liberating.

Another example: I'm very good at fixing things. I used to be an auto mechanic and usually when I look at a mechanical object I can see how it comes apart and, usually, how to fix it. When I see someone trying to fix something and I go over to help, if I'm staying within my power, I ask if I can help, let them know I'm good at fixing or that I've fixed something like it before, and I start a conversation with them about how we can fix the thing.

If I'm giving away my power, I start the conversation with: "wow, it's been a long time since I've fixed one of those, I don't even know if I remember how", or some variation of that. I'm letting them know my weaknesses before I let them know my strengths. Invariably, when I give away my power, the person discounts my input and even if I know how to fix it, they prevent me from helping. When I'm in my power, the person usually hands me the object and it gets fixed.

This brings me back to an important question: How do I talk about having MS without giving away my power?

Telling someone I have MS invariably brings up lots of preconceptions in a person's head and they might treat me differently now that they know. So the first thing I do is have a conversation with a person about their MS stereotypes. It puts everything out in the open as they then know what's going on for me and what's realistic and what's not.

When I talk about my MS, I always talk about it from a place of power. I don't talk about it as how it limits me, I just let them know it's a fact of my life and go on from there. I want to shape their assumptions about me to know I'm just a normal guy with MS, not the miserable, pathetic stereotype they may have in their mind.

I try to watch what I say to be aware of when I'm giving away my power and be aware of when I'm shaping someones assumptions to think worse of me.

I know that giving away power leads me to bad places, and when I look over the history of my episodes, I can usually find a way in which I was giving away power in a major way at the time of the episode. I don't know if holding onto my power will prevent more episodes, but it's been a good measure for how healthy I am.

I think it's important to note that MS does rob us of power. The question is if we're giving it away before the MS comes to prove the point.

Auto-Immune?

Several years ago my thinking on MS shifted radically. I was working with a patient who was suffering from an auto-immune condition. As we talked about the history of her condition, it became clear to me that the imbalances that led to the auto-immune condition existed long before the symptoms started, and, more importantly, her own actions and choices were directly contributing to the condition. In essence, she was creating her own condition.

I began to rethink MS at that point. MS is an auto-immune disease where the immune system goes after the body. Another way of talking about it would be to say that we are doing it to ourselves. At that point, I started looking at my life and trying to figure out how and why I would want to make myself sick. What I found is that over and again, my actions and thoughts were a contributing factor in my MS.

I want to be very clear, I am not blaming myself for having MS, nor do I think anyone ever should. There are many contributing factors to MS, and our actions are only one among many. But the idea that I may have some influence or control over the course of my MS is very powerful. It's a two edge sword, owning the power for the condition means that I have to come to some sort of peace with my role in worsening my MS, but it means that my actions can help me to get healthy.

I am an acupuncturist and a healer. I tend to see the body as comprised of Qi (roughly translated as Internal energy), and I don't see a separation between the body, mind, or spirit. In that vein, every one of my thoughts, feelings, or actions can contribute either to my health or to my sickness, though it's never completely clear which is which. I also know that my body can be giving my clues about what's going on in my spirit and mind, so I need to pay attention.

As I wrote in my introduction, I now look for the actions and attitudes that have power in my MS. If I begin with the idea that I do this to myself, then I have to work hard to change the parts of myself that don't contribute to my health. This is not an easy process as I'm quite connected to some of the things that need changing. The three most powerful things I've found so far are: fear, self-hate, and giving away my power. They are all connected to one another and I will write more on them in the future.

How I explain MS to the layman

As I posted about earlier, whenever I mention to someone that I have MS, my next question is always if they understand MS. It's an invitation to them to have a conversation about MS. If they don't understand it, or have no experience with it, I try to give them a way of understanding it. Things are much less scary if you have a box to put them into, so I give them one.

The box that I use works for me because I used to be an auto mechanic. I can talk about mechanical devices with ease and confidence. My advice is to find a box that resonated with who you are. Mine goes something like this:

MS is a disease that effects the nerves of the body. Nerves are like wires - there's a nerves down the middle that carries the signal and then it's surrounded with insulation called myelin. The myelin does two things, the first is that it protects the nerves from damage, and the second is that it speeds the transmission of the nerve signal. MS is an auto-immune disease, which means the immune system mistakes the myelin insulation for a germ and it pulls off pieces of the myelin called plaques.

That causes two things: the nerve transmission slows down which means that the sensation or the muscle impulse doesn't travel as quickly between the brain and the body, and secondly the nerves can "short circuit" causing inflammation around the nerve, which slows it down even more. The amazing thing is that the body then puts myelin back on the nerve. Then the swelling goes down, and the nerves return to normal. I have what's called relapsing-remitting MS, which means that my immune system pulls of myelin, my body puts in back, and my symptoms are mostly temporary.

But there are cases where the immune system pulls of the myelin faster than the body can put it back, which can lead to scarring on the nerve itself. This is called a sclerosis. MS is named because it can happen multiple times in the body, thus multiple sclerosis. If this happens a lot, it can lead to more progressive and permanent damage in the body.

No one knows why it happens or what causes it, but it's basically this back and forth in the body, so sometimes I have symptoms and sometimes I don't. I'm very open about my MS, so if you have any questions now or anytime, just ask.

That's about how my schpiel goes. Most people understand the image of wires short circuiting and not functioning correctly. Then they get fixed which either makes them work like before or differently than before. I give them a way to understand the condition and then it's not scary anymore. We can talk about it too. Life for me is much easier this way.